recurrence

MarilynOCC

Hi @JaneWest and @CurlyHair Recurrence is always tough.  I've heard some women say that it was harder than when they were fi st diagnosed.  I don't know if you feel that way or not.  I am sorry that you are both back in treatment.

@JaneWest.  Yes there are different types of ovarian cancer and each type can respond differently to different types of treatment.  For example, the most common form of ovarian cancer is called epithelial high grade serous ovarian cancer.  Most women with this type of ovarian cancer are often diagnosed at stage III.  This type of ovarian cancer can be associated with a BRCA mutation more so than others.  Women with BRCA positive disease also have a better response to PARP inhibitors like the drug Olaparib (Lynparza).

For an overview of the different types of ovarian cancer you can go to our website:
http://ovariancanada.org/About-Ovarian-Cancer/Disease-Basics/What-is-ovarian-cancer

If you would like further information, please let me know.  I would be happy to talk to you.

irishsurvivor

 Hi @JaneWest I was diagnosed with Stage 111 High Grade Serous Carcinoma in 2012... I had chemo , surgery then chemo after... I was doing fine numbers always  below 13 until Jan 2017.. My numbers went up slightly then 3 mths later they went down again a little.. My oncologist wanted to have a look to see what was going on and sent me for CT scan.. They found a spot.. I had surgery once again in July and I was told they found 5 nodules.Yes my cancer was back.They removed all of them and I was lucky  they were not attached to anything ... I didn't need chemo as they got it all.. So now I am in remission again ... Numbers are great again.. TG.. Stay strong.We just have to keep fighting.. It may come back again but I will never give up... Recurrence is tough but you know what we are tougher ...!!!! I have been referred to the Cancer Genetics and High Risk Program.. 

Flowergirl

Hello @irishsurvivor, thank you for posting your update and glad to hear you are feeling ok.
@CurlyHair
@JaneWest
hope you are feeling ok tonight

JaneWest

Thank you ladies. I have just come out of eight days in hospital for a bowel obstruction. I'm feeling much better now but recovering from the obstruction is a slow process, and needs to be carefully monitored, esp as I have not yet started any treatment for recurrence. No ascites shown in the CT scans so I feel fortunate for that. @Marilyn yes, it is true for me that this recurrence diagnosis was far worse than the shock and fear of being initially diagnosed. I'm hearing a different narrative from the doctors now about what my life will look like going forward. Incurable, always have recurrences. That's a hard pill to swallow, and to wrap my head around. How do I talk to my two teenage boys whose lives are just beginning?!  I'm getting there tho, mentally. I am lined up to hopefully begin the Olaparib drug trial in the next two weeks, once all tests confirm my eligibility. I have a hope for us that something exciting will be developed in the next few years, that will allow us to live with this disease longer, and possibly even find a cure! They are continually developing new medications and treatments that are showing promise. I sense an impending excitement around advancements in genetics and cancer treatment. And yes, we need more $$$!

Flowergirl

Hi @JaneWest - hope you are feeling ok today, and better each day now that the obstruction is dealt with.

JaneWest

I am feeling better, a small improvement each day. Still not out of the woods, and I'm surprised at how slow this process is. But it is the bowels so that pretty much affects everything else!! I'm so thankful I can start Olaparib finally next week, another new adjustment for the body to make. But an exciting one.  thanks @Flowergirl .  Will talk soon.

sharon

Hi I was first diagnosed in 2009 with stage 1 ovarian had surgery and 6 treatments of carbo/taxol. I tested positive for brac2 co in 2013 I had a double mastectomy reconstruction surgery done. In Sept 2017 I was released from the cancer care clinic to my family doctors care . Was doing great till Feb was having constipation went to my doctor has a scan and the cancer had returned in both my lungs and had some enlarged lymph nodes . My ca125 was 271. So was sent back to chemo same as last time was suppose to get 6 only got 2 because I had an allergic reaction .so chemo was stopped my ct scan showed significant reduction in the more and my ca125 had dropped to 37 so I was put on lynparza I take 16 ills a day .I have a few side effect but I can deal with them .I was told today that my ca125 is now 22 very happy about that but I will feel better when I get my scan done . I was very disappointed when it came back .but turned that disappointment in to positivity and take it one day at a time .

Flowergirl

Thank you for sharing your story @sharon and you have been through alot also
We hope you will find some good support here on the site.
- wondering are you still on the Lynparza? 

sharon

Hi @ Flowergirl I just started taking the lynparza on May 10Th . It's going good so far . Go for my first blood work next Wednesday hoping it's good .

HeidiD

I have had 2 reoccurances and still doing chemo.  I am on Caelyx and it is proving to not work.  My CA 125 levels have doubled in the past month.  What drugs has anyone been on for a third line of defense?  I have had Taxol and Carbo for the first 2 rounds and this last round was just Caelyx.  Thanks!

Flowergirl

Hi @sharon - glad to hear your are doing ok on the Lynparza.
Hi @HeidiD - sorry you have had issues with those drugs - has your DR team provided you with some options now?

HeidiD

@Flowergirl I have to move off Caelyx as it is not working to get rid of the cancer.  I am wondering what is typically the next chemo drug that is perscribed...

Flowergirl

Hello @HeidiD - sorry to hear you are having issues with those drugs. Not certain that there is a typical answer as it seems treatment varies for everyone according to your condition, perhaps tumor type and response, etc.
Are you on a chemo break now or is the DR team going to try variation or another drug type for you?
I'll also direct message you. 

CurlyHair

@HeidiD I know about cisplatin, another platinum based drug.  I have provided to a USA website that lists drugs available.  Keep in mind there are drugs on this list that have yet to be approved by Health Canada but are available in the USA.  Rucaparib and niraparib.  Olaparib is available.

https://www.cancer.gov/about-cancer/treatment/drugs/ovarian   

Please ask your doctor about the drugs on the list. There are so many out there that may or may not be relevant so I leave it mainly to my doctor.  I do not know enough to form an opinion of one over the other but I have asked her about the list and she is aware of them all of course.  

Good luck.

Teddybear

Hi Sharon,I started on Olaparib three days ago. I was wondering how you are doing on the Lynparza? Have you had any side effects.

CurlyHair

Hello everyone.  Dropping into read other comments and tell you I am now receiving Cisplatin with Taxol for recurrence.  Cisplatin is more potent than Carboplatin for me.  Much more tired and a little nausea which I am managing.  I am doing well so far.  Feel good once the first week of chemo goes by.  I hope everyone is ok.  Take care 

midcanada

@CurlyHair
I am also on Cisplatin with Docetaxel....today is day 15 after my first infusion. 
Day 3 to day 7 were hard and I needed  anti-nausea drugs every 4 hours, both Ondansetron  and Maxeran, plus twice daily Ranitidine.  I could only eat very mild food (white toast, yogurt, ginger infused water) and I struggled to stay hydrated.  Nausea would wake me up also.
After Day 7 all is well...I feel fine.
Quite a change from previous chemo with Carboplatin and Taxel--I had no issues with nausea at all.
I know now to be prepared for my next infusion on Monday.....take the drugs before nausea strikes.

Best of luck to you.

CurlyHair

@midcanada
 
Exactly.  Get those anti nausea into you to be safe.  Good luck. 

CurlyHair

I am writing to note that with the cisplatin I have had the taste buds change.  This lasts longer than the first week.  It makes everything taste off but thankfully no nausea.  I have to try foods with a bit of flavour to them because bland does not taste good going down if that makes sense.  

VSC

Tomorrow I will find out if I am having a reoccurrence. I was diagnosed in Sept 2017 and finished chemo in April. I had clear scans, but my CA-125 went from 6.3 to 60 in about a 6 week period.

A few days after the scan I had before last showed no tumours, but some lymph nodes were slightly enlarged, I started feeling nauseas for no reason. I had a few bouts of heaving and one of vomiting. Throughout my whole chemo treatment I didn't throw up a single time or even come close. I also told the doctor that I had been experiencing lower bowel pain/cramping but it was not accompanied by loose stool, just cramps and regular poo, or sometimes it starts out regular and turns into a loose during the same "sitting." She thought a tumour might be the cause and sent me for x rays for my lungs and abdominal area - but they showed nothing.

I have been feeling like I am back on chemo. I was feeling really good for about 2 weeks and now I feel like hell again.

I'll be at the BCCA tomorrow at 9:45 getting the news either way about my latest scan. I'm a transplant from the US and usually this time of year I would be shopping for goodies for a Thanksgiving dinner, but I don't have the energy.

Flowergirl

Hello @VSC - thank you for sharing your story and it is good they are on top of looking into things for you. Wishing you the best possible outcome for sure.

VSC

@Flowergirl I do have a reoccurrence. My lymph nodes have grown and the doctor found cancer plaque during a digital exam. I will start chemo again at the end of the month. My latest ca-125 was 220

Flowergirl

Hi @VSC - sorry about the recurrence issues... hope you are feeling ok today.
Will they give you the same chemo drugs as before and how are you managing... do you have an in-person support group?

VSC

@Flowergirl - thank you

The team at BCCA are going with a mix of carboplatin and something called Cailex (sp) at once a month intervals instead of weekly like I was before. I don't know what to expect, but my first go around with chemo wasn't fun, but I got through it with few problems and was able to finish it and was in remission for about 5 minutes, and I didn't even know it!

I'll be at BCCA this Friday with bells on - 

I don't have a support group. 

Flowergirl

Thinking of you @VSC and I'll message you

VSC

My first bloodwork shows that my WBC took a hard hit. I don't really know what to expect with this treatment and there is a lot of worry for me being knocked down so quickly.

mother42275

I was diagnosed in sept. 17 and had a radical hysterectomy 9 days later. Needed a second surgery for complications for I didn’t start chemo until Dec.17. 7 rounds of carbo/taxol. When I had my follow up a month after chemo, CA125 had gone from 18 to 260. Scan revealed I had pelvic lymph node and lung Mets. It’s back, stage 4, “incurable”. We did pelvis radiation to try and buy some time. I’m not scared anymore, just sad. I have 4 teenagers and I see the fear in their eyes most days. I’m currently not a candidate for any trial drugs. Genetic testing all came back negative. Now we just wait. Palliative Care is where we are at. Cancer sucks!!! BUT, my family and I are now extremely intentional about everyday. Hug your loves, tell them your heart...let nothing stand between you and those around you!! Carpe Diam. I have a strong faith that brings me peace. Blessings to each of you...it’s a hard road. 💜

MarilynOCC

Hi @VSC .  Have you had a second treatment yet?  It is an anxious time when you are not really sure how you are going to react to the chemo.  I hope that through the holidays you find some time to relax and enjoy being with family and friends.

MarilynOCC

Hi @mother42275.  I'm so sorry to hear your news.  It is very sad and must be terribly difficult to see the impact on those around you especially your children.  How did you get over being scared and get to a place of peace?  I suspect that based on your post that your faith has been a part of that, but even so, it is amazing that you seem so calm.  Thank you for sharing your thoughts with us and reminding us to Carpe Diem.  I don't know if you celebrate Christmas but I do hope that the holidays give you the time and opportunity to do all that you suggest - hug your loved ones, share your heart and experience peace and joy even the midst of all that is happening to you.  Thinking of you and all on this site....

Flowergirl

sending the love and prayers to you @mother42275 - thank you for sharing your story with us.