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My Ovacome

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Ericksov profile image
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Hello I was diagnosed with low grade serous stage 4 ovarian cancer in April 2017. I had surgery which was suboptimal because of massive scar tissue. Did my first set of chemo gemzar carboplatin and can’t remember the third one (chemo brain). Oh and Avastin. Series complete in November 17. Kept taking Avastin so I’ve been on that for over a year. CA 125 went from a high of 75 to a low of 9. Now my CA 125 is up to 28 so they want me to start weekly taxol which I’m thinking about so it is very helpful to hear your experiences with that.

I must say I enjoy hearing from my UK sisters and learning of issues with the healthcare system. Sounds like it takes a little longer in the UK to get results ( for example I access my CA 125 online the day of my appointment before I see the doc) On the other hand it seems to meet you have more access to different chemo drugs than we in the US have.

Thanks for sharing your stories you all are important to me

Victoria

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Ericksov profile image
Ericksov
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TinaB1 profile image
TinaB1

Hi Victoria and welcome.

Not all women have a raised CA125 at diagnosis. Roughly 20% have a reading within normal range. Sometimes, they may have a doubling, say, 8 to 16 and then back to, say, 7 after treatment.

What this means is that this way of tracking low grade isn’t an option.

Having a CA125 within normal range whilst having late stage disease can release a person from the constant pressure of watching numbers which brings on its own worries.

In Britain, many doctors avoid giving out the results of the CA125 to patients but will do so if the patient is insistent. That’s what I’ve picked up over the years.

With low grade, many doctors follow a Watch and Wait approach and only give treatment when certain symptoms turn up, like ascites.

The latest research from M D Anderson in Texas is that hormone treatment can be effective with low grade.

I was told I had between several months and two years without treatment. I had double agent carboplatin and had a partial response. Three months after the end of treatment, I had a scan and there was measurable growth.

Two years later, after an emergency operation to remove a large necrotic tumour, I was given the news that I had advanced, progressive disease which had high grade features. It was growing fast and was invasive.

I was told to wait for symptoms and referred to the hospice for bowel and pain management.

All of this is unremarkable except that it’s now 7 years since I was diagnosed and I haven’t had chemo since the first carboplatin.

I haven’t been free of the disease. It’s still there and always has ways of reminding me it’s there.

My oncologist says if the ascites turns up, which I think it will, she will arrange for it to be drained and she’ll put me on hormone treatment.

I have lots of scar tissue causing pockets with calcification in the abdomen so I’m not happy with the plan. I’m going to get a second opinion when that prospect rears its head.

Nothing though, changes the fact that I’m still here and I haven’t had to endure treatment after treatment for all these years.

My oncologist has no answers and neither do I.

Love to you. Xx

Ericksov profile image
Ericksov in reply to TinaB1

Wow that is very interesting and helpful. Right now I’m playing with a possible bowel obstruction and my last c scan the bowel looks “angry” with a film over large sections. My on/oncologist would like to do more surgery which I’m ambivalent about.I am envious of you 7 year span thanks for sharing love victoria

TinaB1 profile image
TinaB1 in reply to Ericksov

Hi Victoria ..

Here’s the link to M D Anderson which is the leading hospital for low grade :

mdanderson.org/newsroom/201...

I also have bowel issues which is caused by the disease.

I was put on a bowel regime by my hospice doctor five years ago after having a number of blockages.

I now have what doctors call a lead pipe bowel.

I have a Movicol sachet in the morning and a few Bisacodyl at night as a stimulant with Senna as a stimulant and softener. If this doesn’t quite work, I take Lactulose on the second day. I’ve had a few bowel blockage scares but I haven’t been hospitalised for five years. Bowel blockages are something I’m afraid of since I’ve had them in the past and been very ill.

The link shows interesting reading.

Love to you. Xx

ScardyCat40 profile image
ScardyCat40

Welcome Victoria,

I am also Stage IV low grade and I was diagnosed 7 yrs ago. My CA125 has always been on the high side 2400 at diagnosis and has only briefly been in a normal range probably reflecting the fact that I always have some low volume residual disease.

I have had surgery, three lines of chemo, hormone therapy and recently I have been on a clinical trial. I currently have pleural effusions on both sides of my chest. The left side was recently drained and found to be malignant and I have an indwelling catheter on the right side to manage the right pleural effusion.

It is interesting that your oncologist is starting treatment based on your CA125 which most would consider as within the normal range. My oncologist prefers to wait for measurable disease on the CT scan and my symptoms.

Hi Ericksov

With OC recurrences here in Australia they will offer treatment if you have symptoms, not based on CA125 results alone. Without symptoms and if you are generally well then usually a "watch and wait" is suggested, because let's face it chemo is not going to be a picnic in the park. Have you had scans to accompany the CA125 result (which here in Australia would be considered in the normal range) which show tumours increasing?

Good luck with your decision making, Dawn

jmackmom profile image
jmackmom

I’m sorry I can’t really help. I researched and chose single agent Carboplatin. It was not without side effects but by comparison it was a breeze. I had 1A ovarian but high grade. Taxol doesn’t work for high grade cells. Best of luck.

TinaB1 profile image
TinaB1 in reply to jmackmom

I was just wondering why you are thinking that Taxol doesn’t work for high grade? It’s used often for that. Xx

BeeWild profile image
BeeWild

Hi I have 3C high grade serous and have my first recurrence 4 months after frontline chemo so I am on weekly taxol

My Ca 125 was 18 after first line treatment and went to 1993 before I started this regime and after 3 infusions it’s come down to 345! The taxol has been very tolerable and I’m using the cold cap to try and keep my hair which is working up to now x

I’ve continued to work and take the dog out for walks, housework etc so up to now weekly taxol chemo has not had a massive impact on my life but is hopefully zapping the nasties in my tummy! I’m also on the CEBOC trial which you’ll find details of in my previous posts

I have no doubt in a few weeks I’ll feel tired as other ladies who have completed the 18weekly taxols have advised me about week 10 the fatigue kicks in so I’m making the most of the time I’m feeling well x

Good luck with your treatment and keep us posted xx

jmackmom profile image
jmackmom

Hi Ericksov

I researched and found three studies that said that single agent Carboplatin was just as effective as the Carbo Taxol combo. Taxol is much more toxic. In one of those studies they mentioned that Taxol was not effective against high grade cells. I would love to site the studies but it will take time. It’s been two and a half years since my initial diagnosis. I would NEVER tell someone what course of treatment to choose. My oncologist agreed with my research. Everyone needs to advocate for themselves. Best

Also I was diagnosed at stage 1A with high grade 3.

Ericksov profile image
Ericksov in reply to jmackmom

Thanks for the info I appreciate your hard work. Just as a reminder I have low grade serous tumors. I’m hearing that taxol is better tolerated if given weekly and several people have reported that it is. As I like to say it’s like the choice between a stick in the eye and a hot stick in the eye. I wish you best and trust that you will continue your positive path

Maus123 profile image
Maus123

Hi Victoria. I'm in the low-grade 'boat' as well. Stage 3a with massive ascites and a ca125 of 4500+ before the first debulking surgery in 2015. My ca125 has never dropped to a normal level.

The one thing I would add to the other ladies' helpful input is that I would always take the surgery option when it is being offered, as that strikes me as one of the more effective treatments for low-grade serous OC. After my initial surgery, I was on watch&wait for more than 2 years with a ca125 of around 100. For my own recurrence, some 'active' lymph nodes showed up on the PET/CT scan, in addition to a sharp rise in ca125. That's when I had the second surgery.

So if your scan happens to show suspicious tissue or tumours on top of an abnormally high ca125, and the surgeon thinks it could be operated on, that could be worthwhile, even if it is just a laparoscopy. But it could also be a valid approach to wait for symptoms.

A ca125 of 28 alone would not strike me as a reason for immediate action though, especially chemo for low grade OC (as that's said to be less effective than against high grade, though ymmv).

All the best, Maus.

Ericksov profile image
Ericksov in reply to Maus123

Thanks Maus. Surgery has been mentioned but the first one was so useless. My momentum was like concret and they could not cut through it without destroying my bowel and I was not in a mood for a colostomy. Actually my cancer was discovered while attempting a lap gallbladder removal and they could not get through the momentum. My doc would like to go in again but I don’t see the point. Thanks for sharing I wish you well

Maus123 profile image
Maus123 in reply to Ericksov

Ah ... that does not inspire confidence in the surgery option, does it? Low-grade OC is just so blastedly difficult to treat :( . Almost have to listen to your medical team, maybe get a second opinion, and then run with whatever feels right to you. All the best. Maus

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