Oncology Appointment

[kristinaapril]

We made it to oncology today, after finding out the cancer is back on Friday.

Recent CA125 came back at 288 (3 months ago it was 15) - so it gave us a good indication of what was going on.

The fluid came back with cancer cells in it; however, nothing could be drawn from the CT so likely it's seeding along the abdominal cavity.

There is also a small mass on the lung; could be cancerous could be non-cancerous. Scheduling a biopsy asap.

We have a meeting with the gyne oncology/surgery on May 8th to review CT scan again and see what he thinks. Normal oncologist was not to keen on Avastin or olaparib - so see what gyne oncologist says - as he actually runs some clinical trials.

Normal oncologist stated that when chemo is started again - it will be Taxol and Carbo - as she had such a wonderful response to it first line. I am a bit confused as I though a different drug would be used - definitely a discussion to have with the other oncology team.

Mom asked some basic questions - such as if she can have teeth pulled before chemo and if she can still go to the chiropractor. Not sure if it's just our oncologist (perhaps his ego); but he definitely was throwing out jabs towards chiropractors for trying to be "miracle workers". Even brought out statistics that if you did a CT scan of 100 individuals - 70% of them would have disk-degeneration, regardless if they had pain or not. And that it is very hard to judge if chiropractic works, as even those who claim to feel relief don't have any physical changes on ct scans. I did have to bite my tongue - before I told him that I am a researcher and he didn't have to explain bloody research methodology to me. Luckily mom did save me, chiming in to say that chiropractics helped her back - and he did give a begrudgingly "yes" to continuing it.

Pretty crap news (though honestly, I feel any recurrence includes crap news). Trying to stay positive, and at least having a basic "game plan" started.

Wishing you all well.

Kris x.

[lorraine71-Australia]

Kris, Sorry to hear about the 125 but as soon as a plain is in place I'm sure that will be controlled, as for having teeth out as long as your mums platelets are ok I had 3 out but I would talk to her team first and hopefully she has a good dentist, mine was very aware of my platelets and would not do it without my oncologist agreeing.

Take care Lorraine xx

[Lily-Anne]

They tend to use carboplatin again if there was a good response last time. Most type one an two tumours have a good initial reaction. Platinum is considered their best tool. Although I’d want some good reasons as to why they would rule out other options. Is it cost related? The potential of no funding? Or personal choice of the oncologist?

They don’t consider PARP for Barca negative as you need a trial for that. Avastin is available privately. Although some have been offered for recurrence on nhs as a combo which so find really confusing. Or I’ve interpreted it wrong.

My oncologist wrote out a list of options and sent me away with a pile of info leaflets

LA xx

[Naimish]

Hi Kris, I am seeing quite a bit of similarity with my wife Gauri's case and your Moms'. Dec 2015 PPC diagnosed, debulking and chemo done.... May 2016 to August 2017 everything under control. Therafter CA125 rises to 50 and 60 and PET CT shows two small aberrations in the liver. So, back to surgery but turns out non malignant but TB (under treatment), probably acquired it on a flight to USA from India (due to being immuno compromised).

Currently, very little fluid seen between the lungs and chest cavity, CA 125 around 200 , so on Gefatinib. Its three months now and the fluid level has not increased nor has the CA125, so making the most of it by travelling and enjoying the life.

So, I have enough reason to believe and sincerely hope that your Mom will not need chemo for the moment.

Brgds

Naimish

[Lyndy]

Meh! Sorry to hear this but I guess that’s clear evidence and that getting going on chemo is the best thing. I was interested that they wanted to use carbo/taxel again... I suspect I will be offered this too...maybe it’s a new protocol?

I don’t know about your Mum but I am struggling to accept that I need chemo again...it feels like Groundhog Day but I know that’s the likely outcome for my appointment on Friday.

All best wishes to you both xx

[Lindaura]

Echoing all of the above.

It is heartbreaking to hear about recurrence so soon, but I agree about the Carbo/Taxil combo.

This cancer is obviously sensitive to it, which means bringing out the big guns again should slaughter this new growth.

Avastin is expensive and hard on folks, and it's purpose is to keep the blood vessels from forming that feed cancer.

There has been a lot of scientific research on foods that do the same thing. Antiangiogenesis it's called. So I am on that diet while I am NED and would advise everyone to try it as it is basically the "Mediterranean Diet" with a good turmeric/Curcumin supplement added to it.

Meanwhile, I wish you luck with your usual Oncologist

And very best wishes,

Laura

[tam57 in reply to Lindaura]

I would like to know more about your Mediterranean Diet and the strengths of the turmeric/curcumin supplements that you take. I have finished a round of chemo carbo/taxol and will be rechecked in June. I am having a lot of muscle stiffness in my legs and hands. Still having a lot of hot flashes. Don't know how to get rid of those. Any thoughts? Thanks for the info.

[Lindaura in reply to tam57]

Hi Tam,

Now you ask two things. As far as the hot flashes, I went through Menopause ages ago, but the herbal supplement DonQuoi, not sure about the spelling, saved me from the hot flashes.

As far as the diet, I am just remembering to have lots of Tomato sauces, dark green vegetables and I am drinking a glass of ruby port before bedtime, and taking a Curcumin supplement from Simply Supplements called Curcmin 12,000mg C3 Complex.

Here is the best article about the antiangiogenesis diet, to stop blood vessels that feed tumours from forming.

ted.com/talks/william_li/tr...

Good luck,

Laura

[tam57 in reply to Lindaura]

Thank you so much for the info. I am definitely interested in the antiangiogenesis diet.

[Kal47]

Hello

I had stage 3b ovarian cancer

I am sorry to here about your illness!

I was on Avastin and had terrible joint pain and diarrhea!

Avastin caused me to have a perforated vowel and I nearly died!

My friend did die from a perforated bowel who was also on Avastin!

I had a colostomy bag for a year!

I immediately stopped using Avastin!

I have been cancer free for 6 years!

I feel Avastin was not a good drug fir me at all!

I could barely walk while using that drug!

I hope I have helped you

I pray for you!

You must stay positive and never let anyone bring you down!

Change your diet and move your body!

God Bless you!

My email address is klombardo47 @gmail.com if you would like to talk!

Kathy

[Lindaura in reply to Kal47]

I was offered a clinical trial with Avastin, but wanted to decline because of the side-effect "perforated bowel" which seemed like a more serious side effect than any other chemotherapy drug.

I was very sick then and felt that my luck was too bad to risk something as life threatening as that.

Fortunately, the doctor also decided it was unsafe for me and the trial was withdrawn.

But, because of learning about Avastin, I learned about angiogenesis and antiangiogensis foods, so I am in that cancer fighting diet.

So sorry to hear about your misfortune and your friend's death. That is just awful.

All the best,

Laura

[tam57]

I am sorry to hear that you had some difficulty with the news and the doctor. I am wishing you the best on May 8th and hope that your treatment will go well.

[IrishMollyO]

Hi Kris

Just to add my little knowledge to everyone else’s . It’s good that Carbo/Taxol will be the combination . It’s meant to be the gold standard of treatment and if you respond well first time to it and have a long enough remission it can be used again . It’s means that your mother is not allergic to platinum . When I had my first recurrence after nearly 5 years NED I was really disappointed to get Carbo only but unfortunately my creatinine levels were raised . However luckily I did respond to the Carbo only.

I was also disappointed not to be given Avastin but reading other women’s comments maybe it was just as well. Best wishes to your mother in whatever treatment is finally decided on. Take care

XXX

💚💕