Still awaiting CT scan

[Jasmine_Rose]

Following on from my previous post. update; I have a small nodule on my vaginal wall possible recurrence...Booked in for CT scan this week hopefully. I am feeling positive most days as I know it can be removed but wow today I am really struggling. Combination of being 200 miles away from all my family, New dream job (which I have now explained my situation) and they have said they understand but already feeling they are acting different towards me. I don't want them to feel sorry for me I just feel like a slight problematic person which I cant even help with my health issues. I just feel a little like I am unable to explain my situation because looking at me I look like a healthy 26 year old but inside I feel saddened that I am having to put my life on hold until I know I will be better again. My mum is having such anxieties over me and I don't no whether I should be back home with family until this is dealt with. My partner (Jack) is currently in his second year of University and he has so much to deal with in regards to his studies and I know he loves me undeniably and I love him more than anything but I really cant help but feel I am bringing added stress's or pressure to the table . I know its not my fault and my emotions are everywhere right now. Maybe I should seek some professional help and talk to someone about how I am feeling. Also I would really like to thank and I would recommend using CBD oil I use 15 drops a day it really helps with my anxiety's and prevents panic attacks when over worrying. Wishing everyone the best rest of the weekend and week ahead xx

[Lindaura]

Dear Jasmine,

I know just how you feel.

I am about a thousand years older than you, but after knocking back my first recurrence, I felt like a million bucks and started expanding my old business.

I looked great and felt great.

I was on Niraparib, as I am BRCA1 positive, and was certain it would keep me cancer free forever.

But it didn’t and I had to go back into treatment a month ago.

I didn’t want to tell my clients.

I didn’t want them to think I wasn’t up for the job...

But guess what?

One week on Chemo and I definitely was NOT up for the job.

I had to tell all my clients what was happening to me and had to bow out of my usual work.

I can maintain my business on the computer and since I first became ill, my bed was moved to my husband’s office, which is close to the loo, so I now have his office and he has mine!

He does all the physical work and I am behind the scenes.

It makes me sad and it’s very hard on our finances, but we must soldier on.

I hope your scan news is good news.

Oh, and I loved your photo, although the shock of seeing someone so young ( and I know this journey started when you were just 17) was pretty remarkable.

I wish you the best of luck.

Hugs,

Laura

[mupash in reply to Lindaura]

HI LAURA,

JUST SAW YOU WERE ON A PARP DRUG AND YOU SAID IT DIDN'T WORK. COULD YOU TELL ME HOW LONG YOU WERE ON IT UNTIL IT CAME BACK? I AM BRAC2 AND HAVE HAD ONE MINIMAL RECURRENCE. IT WAS MINIMAL BECAUSE I INSISTED ON A PET SCAN WHICH SHOWED IT. (THE CAT SCAN WAS NEGATIVE AND CA-25 WAS ONLY

IN THE TEENS.) HAVE FINISHED CHEMO AGAIN AND THEY WANT ME TO START ON PARP DRUG, OLAPARIB. DID YOU HAVE MANY SIDE EFFECTS FROM YOURS? ANY INFO WOULD BE HELP. I DON'T FIND DOCTORS TO BE VERY FORTHRIGHT ABOUT THESE ISSUES.

HOPE YOU ARE FEELING BETTER NOW.

HAPPY THANKSGIVING!

LEE

[Lindaura in reply to mupash]

Hi there,

I have always heard good things about Olaparib, but the research doctors insist there is no difference in the effectiveness between the PARPS.

I had no annoying side effects and felt like a million bucks whilst on Niraparib.

This could partially be due to the dosage I was started on, 200 mgs.

Many women are started in 300 mgs and have severe effects on their blood (bone marrow), but not me.

Right from the start, my CA-125 began to climb, but very slowly.

I was only on the PARP for three months. But my Ca-125 went from 15 to 39 to 87 and we were offered a scan, which showed a steady progression of my very tiny cancer nodules.

It seemed to me that the Niraparib was working, slowing down this progress, because the year before, when I had my first recurrence, my Ca-125 doubled weekly, so it went from 11 to 473 in 6 weeks.

With the Niraparib, this was 3 months.

I wanted them to increase the dosage, just to see, but every doctor refused.

And even though I had just three small nodules, and no sign of cancer anywhere else, they refused to operate.

So, I was classified as PARP resistant and offered the DICE trial.

I would encourage you to try Olaparib. Many women, BRCA positive ones, do really well.

When my current trial is finished, I am hoping to get into one using Olaparib and a trial drug that is supposed to make the PARP work better.

So all in all,

I wish you the best of luck!

Laura

[mupash in reply to Lindaura]

HI LAURA,

THANKS SO MUCH FOR YOUR REPLY. I WILL TRY THE PARP DRUG. I DON'T KNOW WHERE YOU ARE LOCATED BUT WONDER IF IP TREATMENT WOULD WORK FOR YOU. DID YOUR DOCTOR EVER DISCUSS THAT WITH YOU. I KNOW IT WASN'T AN OPTION FOR ME BECAUSE THE DOCTORS DIDN'T THINK I COULD TOLERATE IT GIVEN MY AGE AND OTHER CONDITIONS.

I'M KEEPING MY FINGERS CROSSED FOR THE TRIAL TO VERY SUCCESSFUL FOR YOU. LET US KNOW HOW YOU'RE DOING. YOU KNOW MANY OF US HAVE YOU IN OUR PRAYERS.

LEE

[Lindaura in reply to mupash]

Thank you, Lee.

I am feeling very positive right now.

Maintaining semi normal life, 3 days up and around 3 days back in bed, etc, but results look good.

I wish you well also,

Hugs,

Laura

[Katiebairdie]

Hi Jasmine

I quite understand your feelings but you are probably looking for things that aren’t there at work

It’s very normal to feel anxious but perhaps a talk to your g.p would help. You can FaceTime your mum every day.

Not long till your scan. Fingers crossed for you. xx

[Katmal-UK]

Hi Jasmine. Firstly I have to day what l phone, what a beautiful looking couple. Secondly, I feel for you that you are having to go through this at such a young age, or any age! You mentioned seeking help and that is a very good idea. At the very least I would suggest contacting Macmillan or even ringing the Ovacome helpline in the first instance and then maybe look to get some counselling arranged. I know it's hard on your partner and your loved ones but please try not to feel guilty (easier said than done!), you haven't asked for any of this. I would try not to put your life on hold, keep going, take everything as it comes but keep going, I've always found keeping going helps as focusing too much on whatever is going on healthwise is not good for your mental wellbeing. Do let us know how your scan goes, Sending you a big hug. Kathy xx

[Caroles1]

Hi lovely,

I have kids your age and am so sorry you are having to deal with this at your age........what a fabulous photo!

I would find support, even though it looks like you are amazing at handling things.

So far as the job is concerned, it’s a shame you have to be dealing with a re occurrence at this particular time, but, if they can’t deal with it I would question that they would be the right people to work with.

Just want to wish you all the best,

Carole xx