Ovarian cancer going to the brain

[Marycha]

Hello ladies,

I jointed the group and have been following your ups and downs for about a year now but never posted my own story as I have pathological dislike for writting but fortunately enjoy reading.

I was diagnosed with ovarian cancer stage 3 grade 3 in August 2014. That was followed two weeks later by a massive operation lasting over 8 hours which involved removal of numerous parts of my body, followed up by chemo. Remettion for nearly 2 years. Bliss.

After nearly 2 years the bustard came back, another line of chemo for 4 months. All good for about 8 monts. After that I was lucky enough to be awarded a place on medical trial. The drug was called Rucaparib and it worked for about 9 mounts. I had lots of side effects, mainly permanent fatigue and loss of appetite, some breathing problems. However it was worth it as both of my 2 cm and 1 cm tumours disappeared.

In the beginning of October my CA125 starting creeping up again, CT scan clear. A week or so after that I noticed my right hand was weakened and my right leg was restless. At my check in the clinic with a junior doctor I have seen on that occasion did not connect it to the cancer and suggested I take a warm bath for relaxation before going to bed. On another visit a month later counsultant oncologist referred me for a brain scan as according to her ovarian cancer on very rare occasions can migrate to the brain via spinal cord. An fortunately that's what has occurred in my case. I have 3 very small spots on my brain , one slightly biggger then the other two. The biggers effects my hand and arm. I was in total shock as, maybe naively it never occurred to me that it can spread to the brain. Total nightmare. Having it on the brain feels like different ball game. I am on the chemo again. My consultant seems positive. The treatment for this is very limited.

Since my diagnoses and consequent discussion with my cancer team I found out that this is not as rare as I was told. Because of all the medical advances in recent years ladies live much longer with ovarian cancer and the new cases of it going to the brain are far more common ( 12 ongoing cases in my hospital) then previously thought.

Also I have been informed that the experimental Rucaparib would not reach the barrier in the brain.

I would like to know if any of you were similarly effected, if any.

[Lindaura]

Dear Mary,

That is very horrifying news!

Crossing the blood/brain barrier is a problem, but I am sure Taxol does it, as we all lose our hair on first line, Carboplatin and Taxol.

Other ladies, pretty recently, have reported brain mets and how they are being successfully treated.

Please search with the title “Brain Mets” and you should be able to find advice.

I know one lady spoke about a Lazer knife or something like that for surgery which did the trick.

You might have to switch hospitals to get the right treatment and maybe the Ovacome support line can help you there.

I wish you all the best,

Laur

[Bubbles-1]

Hi Marycha,

I'm in the same position as you. Diagnosed. Jan 2015 stage 3c/4. Given Rucaparib after recurrence which has knocked back the 2 tumours around vaginal cuff area. Onc also believes it opens up the blood brain barrier (BBB), and this may happen to more. Esp if Brca1/2.

As I had 9 brain mets, the treatment is 5 days of whole brain radiotherapy (WBRT). Doing well, bit slow moving around due to steroids which make my leg muscles weak. Otherwise all ok. Nervous about long term cognitive effects but I'm exercising and keeping as busy as my body will allow! Will they offer you radiotherapy or as you've 3 mets, stereotactic? (Royal Marsden offer this). Best wishes to you, PM me if you'd rather.

Michelle x

[Bubbles-1]

Sorry, meant to add just had radiotherapy, finished on 3rd Jan. Started Rucaparib May 2018. Very quick to grow on the brain!

Michelle x

[Lindaura]

I just read that research scientists think that PARP inhibitors could prevent Brain mets in BRCA positive people!

ncbi.nlm.nih.gov/pmc/articl...

I am going to keep researching!

Hugs,

Laura

[LittleSan]

Sounds like you're having it tough but there's still scope for positive moves ahead. Wishing you well with your treatment.

Sandra 💐😘