Virotherapy? What have I got to lose!

Hello ladies,

I'm relatively new to this site and this is only my second ever post. My name is Sarah and I have stage four ovarian cancer (or if you read half my medical file I have stage four primary peritoneal cancer, dam doctors can't make their minds up ha ha). I like many others spend hours drawing strength from the posts of others and their responses so thank you already.

Why I write today is because I am about to start (well I am 90% convinced that I'm going to start) a treatment called virotherapy. I have been assessed by a team of oncologists (albeit in the virotherapy clinic) and they have agreed that I will benefit from their treatment. I have been reading posts on here for the last six months and although their have been the odd ones about 'Mexican clinics' nothing has been said about virotherapy. The treatment is FDA approved but not in the UK or America. I could go on about it loads as all I seem to do at the moment is research it but I won't bore you with the details.

In a nut shell, what do you think? Should I do it? It's not cheap!! I have a beautiful two year old son and I'm only 35 and determined to be an old lady, therefore I am determined to try everything to beat this horrific disease.

Thank you in advance for even reading my post! Xxx

23 Replies

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  • Hi Sarah,

    I know nothing about virotherapy, so I have no suggestions for you (helpful, aren't I?!), but I just wanted to say that you aren't alone in having a little one to live for. I'm 38 and have 2 little girls (7 and 4) and I'm determined to be an old lady too 😊

    If you are interested, there's a 'Young Women's Guide to Ovarian Cancer' which I found very helpful. There's a link to it from this website in the pinned posts.

    Yosh x

  • Thank you for your response. I'll have a look at the guide dear fellow old lady wanna be x

  • Wow Sarah..it sounds fascinating if a bit scary! Is this a trial? Will they keep an eagle eye on you to make sure you're ok on it?

    I'd be interested to know more- will you keep us posted?

    Thx and good luck! Lyndall

  • Welcome to the site no-one wants to join.... wondering what your UKoncologists are saying and wishing you well whatever you decide to do.

    Hugs and strength xx

  • Hello Lyndall, no it's not a trial. I have been corresponding backwards and forwards with their oncologists and would be more than happy to send you what information that I have. I have arranged a Skype meeting to iron out some of my pressing questions; namely why they think I'm a candidate for this treatment, what aspects of my histopathology make me appropriate and the likelihood of this 'virus' working for an ovarian cancer patient even though it's not the 'normal' cancer that they use the treatment for. My heads a mess but my husband and I have agreed that as long as it won't harm me and we can afford it we should give it a try. If you want to personal message me your email I will send you all my emails to and from the clinic and the supporting research. No worries if not. I don't know why but my gut tells me that this is the right thing to do / try. They have availability next week at the clinic so things could be happening sooner than I anticipated.

    Sarah xx

  • Hello Mac27, if I'm honest I haven't told my UK oncologist yet. Going to do that at my next avastin appointment. My UK oncologist is very academic and arguably narrow minded. He doesn't believe in the power of diet or the mind etc; he just believes in conventional treatments. I bet he's going to love my virotherapy suggestions xx

  • Hi Sarah, I get what you are saying but I have never heard of virotherapy. I would research it and the findings on successes so far, I suppose you have nothing to lose and I do realise you want to give yourself the best chance possible. But be wary as there are also people out there who take advantage of people like us to make a fast buck. I dont mean to sound negative but what I am saying is be careful.

  • To be honest, when I got the financial breakdown today I was a little shocked about the cost however my logic is even if they are 'fast buck makers' and I'm being had / taken for fool I can live with that, safe in the knowledge that a) I won't be harming Adams future by spending money I don't really have and b) I gave it my all based on sound research and educated guess work. I've had a long hard chat with my husband tonight; he shares your concerns yet we both reached the conclusion that it's better to try and fail rather than live with regrets. Just what if it works? What if it works for ovarian cancer (it's proven to work for other cancers) and it allows me to be an old lady? You never know if you don't try. Again, I can't tell you how much I appreciate you responding. Thank you and all the best for your journey xxx

  • Hi Sarah

    I not sure what country you live in but in Ireland and UK the big news in Cancer treatment is immunotherapy . Virotherapy may be just a different name for it . If it is the same treatment it is showing hope for some cancers like melanoma and they are hoping Ovarian cancer may also respond.

    I know what you mean about having PPC and then told OC as I have PPC stage 3c and told just to see it as OC. It is too rare to get its own home so thank goodness for this site which hugs us too.,

    Please keep us updated on how you get on. It may well be that your oncologists are involved in this new exciting treatment as I'm not sure it has widespread use yet. I wish you and your young family all the best for the future . Take care

    XXX

  • Hi Sarah,

    Me again! I did some research on it myself yesterday- are you going to Latvia for it? That seemed to be the main place that came up in the searches. Just curious...!

    xx

  • The current UK trials are gene therapy with OC being one of the cancers tackled the trial ends next month so waiting with baited breath. I'm interested to know what has led you to virotherapy as a potential aid?

    LA

  • Hello again,

    In response to Lily-Anne, it's a long story really so I'll summarise. When I got diagnosed I researched the hell out of this disease and I read all about IP chemotherapy. When I requested this my doctor said its not done in the UK despite the improved outcomes. One of my Sheffield surgeons was on the clinical trial for IPC in the UK so I met with him and he tried to discourage me even more from IP. Anyway, my husband is Polish so we had a meeting over there with one of his family friends who is a gynaecologist oncologist and she recommended it and found me a polish hospital to have it there. Anyway, post surgery I got very ill and wasn't strong enough for the treatment (and my surgery didn't go to plan as the one yes right ovary couldn't be removed because it was attached to my bowel) so I've felt ever since that I didn't try hard enough and I felt like I haven't given myself the best chance to beat this disease. So to the now, I made myself a spreadsheet of all the conventional and non conventional treatments that people talk about and I rag rated them in terms of my perceived (and my doctors) effectiveness. Next I made contact with the necessary people and got copies of my medical file so I could be assessed for my viability. At this moment in time the doctors (yes Latvia Yoshbosh) are telling me that I have a strong chance of this treatment working so why not give it a go?

  • So basics!ly, they haven't tried it on anyone with ovarian cancer yet and you are going to be that one! Scary and worrying. Are you going to go live in Latvia for the duration of this treatment?

  • Wow! Good for you! Fingers crossed you are the pioneer for us all. It really sounds like you have done your research.

    Interestingly, my hospital has a specialist centre for IP chemo...but they don't offer it for OC - when I asked why not I was greeted with blank faces.

  • Really interesting news. Well done doing something like this outside of normal NHS wisdom. We will all be rooting for you over the next few months.

    X

  • Hi Sarah,

    Its a great chance for you. Ive never heard about Virotherapy so please keep us updated. Im polish, I am BRCA1 possitive. I had an high grade OC stage IIIc last year. Now I am waiting for the breast removal and reconstruction. I am 38 years old, mum of 6 years old boy. I am so scarried about the cancer coming back. Its like ticking bomb sitting on my shoulder just about to blow up. I really want to be old lady and I am trying to be positive but its soooo hard! Best of luck with your treatment, its worth to try it, anything which can help!!

    Take care

    Zaneta, xx

  • Hi Sarah_t_mpv

    I understand where you are coming from but I have to say your posts make me very concerned for you.

    In my opinion the big risk is not financial but the risk to your health. The reason these type of treatments are not available in the UK and why your medics are discouraging is that they are potentially very unsafe. They have not undergone the rigorous clinical trials needed here. Sorry to be blunt but God knows what they could do to you. Working or not working are not the only possible outcomes. Anything from very unpleasant side effects to permanent disability are equally real potential outcomes. You seem to think you have nothing to loose but I disagree. It sounds that you currently are well and able to love and care for your family. That is a lot to loose.

    It is completely normal to feel totally panicked when you are given a diagnosis like ours but please take a deep breath and give yourself time to think before you rush into anything. Allow yourself a little space to slow down and enjoy your husband and son first. Maybe take a little holiday together.

    Then if you do decide to go ahead please make sure that there is appropriate plan in place to cope with any medical emergency and you have adequate funds or insurance should this be required.Having worked as a health professional for many years I have first hand experience of how things can go wrong.

    Loved ones can often feel their hands are tied when it comes to decisions like this. They do not want to disappoint us, they think we must make our own decision and do not feel they have the right to stop us. They see us in a state and want to make us better. Plus they are struggling themselves. But this means it is all can get very complicated and get in the way of good communication.

    Anyway I hope I have not offended you and I do wish you all the very best whatever you decide to do.

    Love Juliaxxx

    PS Being a self confessed massive cynic I am not at all surprised that the clinic has availability next week. Any longer and you may have chance to change your mind? Okay I will shut up now!

  • Dear Julia,

    Thank you for your message and no, of course you haven't offended me. When I posted on here I wanted different perspectives but more so I wanted to see if anyone else had ever tried this treatment. You raise a good point about insurance and forward planning. My polish family live only three hours drive from the clinic so I'm lucky that I won't feel so alone. I suppose you're right to be concerned, I'm concerned, but I don't think the nature of this disease allows us to properly take stock owing to its aggressive nature, also seeing the stats for stage 4 patients I feel is forcing my hand and making me be more proactive. I am happy with the safely profile of the treatment and I will discuss this with my oncologist (UK) on Monday to get his perspective. I may me naive in my approach towards this treatment and I will take the next week to really think about it and make sure it's what I want to do but you should see the success rate of this treatment for other cancers (it's quite impressive) - I appreciate that there is limited evidence regarding its effectiveness with OC and that is what I need to get answers about before embarking on the treatment. Sorry for the waffle and I really do take your point and I thank you for taking the time to write to me. Sarah xx

  • Hi Hi Sarah_t_mpv

    Interested to hear of your possibly going to Poland for treatment

    There are two really good people who you could ask about this treatment

    1. is Ty Bollinger ( Truth about cancer }

    And 2. Chris Williams from cancer active

    Go on their websites I'm sure they will have some info on your treatment

    May be able to enlighten you

    All the next Karen

  • Hi Sarah

    Think you have had some very good insights there . I wish you well in trying something new but agree I would want another independent healthcare professional naturopath or dr to agree its wirty investing your resources health time and money before proceeding. There is so much alternative non tees approaches to try . I find drs are very supportive and give good advice on what may help so long as there are an additional approach to conventional medicine and don't interfere with it in a beg way . You are doing the right thing getting lots of opinions before proceeding . Good luck !

  • Sorry about typos .. I need to get up out of bed !

  • Thank you Susan, let's see what my doctor says on Monday when I go for chemo (Avastin only now) and go from there. Also don't bother getting out of bed if you can have a lie in. My stupid alarm went off and woke me up so I can't go back to sleep x

  • Vira therapeutics is a company spun off from the Medical University of Innsbruck in Austria. They are producing anti-cancer viruses specifically one called CVC-GP which they hope to begin clinical trials with in 2018.

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