Fed up but no option

[viduanujranu]

I am fed.up with all treatment, painful n results in progressive disease. Avastin n irrinotcan every week.... Blood work. CT. Chemo. Is this our fate. No respite. I am confused.

[Lindaura]

Dear Vidu,

Please do not despair.

It is a heavy and very unwelcome burden, this disease.

Because it IS evil and it is aggressive and we have no choice, but to keep fighting it into submission.

I was not eligible for Avastin, but it seems like a truly difficult treatment to have to stay on.

Perhaps there is an alternative for you?

Sometimes it is better, if you are having increased growth of your cancer, to hop back into a Chemo option, such as Carbo and Caelyx, or weekly Taxol, to subdue this thing and get you in a position for one of the new PARP inhibitors.

All I can add is, yes, this is a difficult position that we are all in, but as it is our fate, we must make the best of it.

Get your family and friends involved and enjoy the good moments you can glean our of life.

Be strong, be brave, be smart and keep up the good fight.

Hugs,

Laura

[viduanujranu in reply to Lindaura]

Thanks for encouraging me.

[Grace-53]

We here all know how you feel.

Warm hugs.

Grace

[tara108]

Thinking of you. It is so tough and difficult. Hope things improve soon and sending big hugs from Australia.

[luluw]

We know how you feel. It's awful at times. Talk to someone about how you feel, particularly your doctors. As Laura says, there may be kinder alternatives. I couldn't cope with Avastin at all.

Keep in touch and let us know how you are.

Sending hugs

Lou xxx

[JayGeeCee]

I completely get how you’re feeling. After chemo followed by 8 months of Avastin I’d had enough and asked to stop treatment. I just want some “normality “ whatever that is.

Even when I didn’t feel under the weather the constant round of treatment, consultations and blood tests reminded me that I’ve got this wretched disease.

So sending you a big hug from France.

Joy x

[viduanujranu]

So what u r doing now. Discarded chemo / Avastin. I hv decided to have break, whatever the results may be. Big hugs from ur sister dear.

[Januk2612]

I’m sorry to read how it’s all affecting you. However, let me say that I was told that future chemo treatment options would only be for maintenance such as bowel blockage. I was told after first line chemo that the disease was platinum refractory (it grew during chemo).

That was in February 2016. I’ve been managing almost 4 years since diagnosis (2015) with advanced HGS 3C and subsequently mets around liver etc etc.

I’m doing other things, following a few alternatives.... all of which seem to be currently keeping the disease stable. I have no options available to me via NHS. I don’t qualify for PARP’s nor am I eligible for clinical trials. My Onc says 2 fold = 1. my heart damage after first line chemo. 2. Due to some of disease having spread to around bowel.

In some circumstances, despite feeling that it’s all hopeless.....it isn’t always that way. I’m still here and managing really very well despite those dreaded stats about survival (mine would’ve been 5 to 12 months). Certainly my Oncologist, CNS & ex clinal trial nurse have encouraged me to keep doing whatever I’ve been doing.....because it’s helping me right now.

Best wishes to you 🤞🏻🤞🏻

[viduanujranu in reply to Januk2612]

What r alternative u r doing. Its good to hv stable disease without chemo. I hv HGS 3c. I want respite without chemo

[Januk2612]

I’ve been part of a private study with Care Oncology Clinic but my GP now prescribes the Metformin and the Atorvastatin I take. I obtain the Mabendazole on private prescription. The other drug they use as part of their protocol is Doxycycline but I cannot take this due to previously known sensitivity. I also use CBD/THC. I’m also prescribed low dose aspirin and just recently added Dipyridamole.

There are a couple of groups I found regarding alternative off-label treatments. 1. (Facebook) Jane McLellands Off-label drugs for cancer. 2. Care Oncology Clinic website careoncologyclinic.com/.

PM me if you are interested in the Fbook link I found the most helpful in regards to information for the other alternative I mentioned.

My other recommendation would be to use online research using any of the drug names I have mentioned, followed by ovarian cancer for further info on studies ie “Metformin and Ovarian Cancer” etc. The important thing if you are able to is enlist the help of your GP / clinician / pharmacist - I was surprised by their help and encouragement to be fair - although my Onc wasn’t as keen on the off-label drugs at first, but it is now picking up a fair bit of attention. I have regular blood tests to check liver / kidney function but just for perspective, so far none of the side-effects from what I’ve been doing have caused all my hair to fall out or given me a heart attack or put me in hospital with suspected neutropenic sepsis.

Jan

[viduanujranu in reply to Januk2612]

I am bloating, unable to breath easily due to gas trapped in upper body. I don't hv sugar or high bp, can I take medicine mentioned by u. I am having pantop 40 mg twice. But no respite. Pls guide me.

[Januk2612 in reply to viduanujranu]

Sorry I missed yur post. I am not a clinician but if you follow the link to Care Oncology they may be able to help answer.