Circling for ideas & next steps - not ready to give up!

[Agility]

Hi a few weeks ago I posted that instead of moving forward to the LOGS MEK inhibitor trial, my low grade OC had accelerated and broken lose.

Suddenly even as a low responder to chemo, I was on the dose dense Rotterdam regime of weekly cisplatin and daily etoposide to try and stabilise me. Some great ladies told me how it worked for them and I went for it!

Forget tumours that have sprouted throughout my abdomen. The issue is bowel obstruction and a distended bowel due to disease lining it. I’m Being fed iv at night (TPN).

My plan augment the chemo thru hyperthermia at home, supplements, coc generics, medicinal herbs hasn’t really worked as I’ve been an inpatient. Arghh!

So far with just one more cisplatin. There is no clinical improvement. My oncologist was positive but now is hoping to see some stabilisation which may allow them to improve the bowel surgically.

BUT since yesterday I’m NIL by MOUTH. I’d planned to go home and start taking immune support stuff, key supplements and mushrooms even this late in the day. But need to drink for these! I will take risk but I need to find an integrated oncologist/ clinic who may be able to stabilise me. If so, I can source the MEKInhibtor which tumour profiling suggests will work with me.

If you know of anyone could you PM me please. I have a couple suggested in Germany. Ones where they have stabilised stage 4 people. Could be bowel cancer, ppc or oc.

Any thoughts welcome. Also I’m looking at therapies. I don’t think proton therapy is applicable in oc because of damage it can do. I’ve just heard of cryo abalation which could work superficial tumour/ nodules but not down around the bowel.

Thanks in advice for your thoughts

Btw I’m a Christie patient and will have independent review with Prof Jayson. I’m also under low grade specialist in Edinburgh and prof gerhenson in USA as the worldwide low grade specialists. It’s just in my case I need a combination of conventional and other therapies to turn the dial now.

Still hoping and smiling

Jane x

[Katmal-UK]

No advice I'm afraid Jane but wanted to send you a hug and also say how amazingly positive you sound given all that you are currently going through and have been through. Keep that smile going and hopefully the Prof and colleagues will be able to come up trumps for you. Best Wishes. Kathy xx

[Agility in reply to Katmal-UK]

Thanks. You have to have a cup half full. Besides the cancer. I love my post cancer life. I was being cleared for over 5 years before they found it. I have just been unlucky. Hoping that luck might change. Half my team is trying to prepare me to die and I’m trying to exhaust all chances of stability. They think it’s my attitude that’s working for me.

I saw scaredy-cat on tv this morning. Lorraine was brilliant yet she said she is still here cos her low grade is slow growing but mine didn’t get the memo! X

[elsalarsen]

Oh I'm sorry to read this, is surgery an option for you? Can they tell where about's the cancer is located and in which intestine? Wondering if an ileostomy or colostomy could be a solution. Hugs xoxo

[Agility in reply to elsalarsen]

Hi Yes that’s s hope. I have an ileostomy it’s parts of the problem. It’s got diseased. I used stoma powder ..., talc! But I have my ct scan on Monday Chemo doesn’t seemed to have worked so we aren’t looking for shrinkage but maybe some stable parts where they can resect and get enough functioning bowel. Got surgical reviews lined up already! Thanks for the idea

[elsalarsen in reply to Agility]

Oh I see! Is there any indication along which part of your small bowel the cancer is located? My sister has an ileostomy as a result of her frontline debulking back in 2013. However, in her most recent recurrence the cancer was growing inside the end length of her ileostomy and was causing her stoma to narrow so severely that you could hardly insert a finger inside!!

She was admitted to hospital several times with bowel blockages but it was hard to diagnose what exactly was causing it because the CT scans weren't showing the narrowing. Dr's tried to resolve it with radiation and chemo, however it was just not effective and the blockages continued. This went on for several months (I suppose because low-grade is slow growing). She became so thin and was basically only consuming liquid at this point.

She ended up having surgery in December last year to resect her stoma- They cut off the length of bowel that was riddled with cancer and created a fresh new stoma that is now working wonderfully!

I have my fingers crossed that they can do something of the like for you too!!!

[Agility in reply to elsalarsen]

That would be perfect. The same could be happening to me. They think the growth is outside. The stoma still works but not like before. So I’m fed iv at night. Fingers crossed. If it stabilised me. I could have MEk inhibitors which could help. You & your sis are a ray of hope.

[elsalarsen in reply to Agility]

Yes I hope so too! It is really scary having the cancer affect a vital organ, and it has been such a blessing for my sis to have been given this fresh start. Even though there's still cancer in other places they are not so "threatening" as what was happening to her bowel late last year. Now she is feeling strong enough again to consider trials- probably immunotherapy, but MEk inhibitor looks great too! Seems to be more immuno trials available here compared to MEk at the moment so I think she will go that route eligibility wise. Keeping fingers crossed for your surgical team consult!!

[Agility in reply to elsalarsen]

Hi just read your profile about your sister. Seems very similar. I might ask about spot radiation. I had been reading about cryo abalation of tumours. Also direct chemo injection of bowel tumours but in low grade - which chemo agent? Now I’m going to tesearch cryo abalation some more. See you are helping me circle for ideas. Thank you

[elsalarsen in reply to Agility]

I just read this while I was typing my other reply sorry!

Ah I would be very cautious about radiation.... I will explain the background in more detail now, as one of the reasons they decided to do the operation in December was because her bowel actually perforated and the surgery was an actual emergency operation!

In hindsight, the Dr's said that the perforation may have been because of the pressure that the cancer was putting on her intestine, but that it also could have been because of the prior radiation weakening it. My sister was very "lucky" with her perforation- the site was so close to her abdominal wall that an abscess formed just under her belly skin and the stool collected inside there. The liquid actually ruptured holes through her belly skin and oozed out that way and not back into her abdomen which would have caused sepsis. It was alarming and like nothing we'd ever seen, we went straight to the hospital and that's when they decided to chop it all out!!

Although everything is ok now and I do understand the Dr's decision to give radiation and chemo a try, however in hindsight I think she should have just had the resection surgery on her stoma in the first place. However surgeons rarely like to put a patient through a surgery if it could be avoided with possible radiation/chemotherapy success. I'm not against radiation, but I wouldn't want her having radiation on or near her bowel again. The chemotherapy she had was Caelyx and Carboplatin (2 rounds)- which was tolerable ok but didn't seem to reduce the cancer in her bowel at all.

[Agility in reply to elsalarsen]

Thanks. I hadn’t thought radiation and no one ever suggested and an op would be better. Cryo abalation is different but I’m not sure used in ovarian very often. My chemo this time was cisplatin and eptoposide. Carbo/ taxol didn’t work for me either. Thanks