New here , hello

Hi Eventide and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

Hi Latchbrook,

Thankyou for your response, I have had stage 3 colorectal cancer, diagnosed and successfully resected a couple of years ago.

i was treated with chemotherapy for 6 months but unfortunately i was told this week that I have pulmonary metastasis

I have been reading up about different types of non cytotoxic treatments as I do not want to put myself through the toxicity of further chemotherapy as I feel well and want to have quality of life rather than length of life , this is entirely my personal choice and I will not be encouraging anyone else to shun conventional treatments!

I came across Fenbendazole as I have been researching around different options.

indeed it is used as a parasite animal wormer which sounds crazy but there is also research to say that it has been effective In slowing down progression of secondary lung tumours in 5fu chemo resistant patients. I am taking this along with CBD capsules, turmeric and many other vitamins! 
my oncologist obviously hasn’t prescribed it and it’s entirely my choice to take a concoction of these medications.

i am in a situation where I have no choice but to try to help myself without taking any more chemo!

I face the possibility of targeted radiotherapy or a resection of my lung ! What joy  

thanks again for reaching out and I do stress that it’s entirely my own risk taking such medication but I feel great in it ️️

That's great to read that you're feeling really well and I hope that continues for a very long time

Thankyou Latchbrook,

that’s very kind of you to saygiven the fact that I am only 54 years old I am keeping everything crossed

Hi Eventide 

I can completely appreciate that you are looking at all sorts of potential medications for your situation, but you may find it difficult to find information about non conventional treatments on the Macmillan forum, as it is it against the community guidelines to promote alternative and unproven therapies. 

I appreciate that you are not intending to promote Fenbendazole to others and would be taking it at your own risk, but I’m just pointing out it might be difficult to engage in discussions about it in this particular community which focuses on conventional cancer treatments.

There have been very few mentions of Fenbendazole within the whole community over the years, as you may have found already, but I hope things go well for you whatever decisions you make.

Sarah xx

Hi Sarah,

Thankyou for your reply and apologies as iam new here and I haven’t got any experience with forums or what to bring to the discussion.

Hope you understand

Absolutely I understand where you’re coming from, and general discussion is allowed within the guidelines. Sometimes, unfortunately, such things can get heated and I’ve seen this happen in one of the groups I am in a year or so ago where someone was promoting an alternative therapy. What can happen if things go too far is that the moderators will remove posts if they do breach the guidelines here, but I’m not suggesting for a moment you would do that. The main point is that you might find discussions around this difficult to find.

I’ll put a link here to the community guidelines so you can have a read through and see what it says about alternative therapies-

Community Guidelines

I realise you are a new member so may not be aware of this, but hope it helps explain things. 

Sarah xx

Hi Eventide 

Hi Eventide Big welcome to the forum . Just wondered if it might be of interest to you to know that my mum first was aware of her lung mets in 2016 , but were visible two years prior to that . Her team sent her for surgery initially which was great and did the trick . She was out of hospital two days later .

Then 18 months ago more popped up . Considering her primary was removed in 2009 /2010 . Can’t remember which one !! But it’s apparently all part of that original spread . She had ten months of Cetuximab on its own which shrank things back nicely . She is now too frail for more treatments. But she has had a fairly conservative approach by her team and they only intervened when growth indicated it was time . Her lung mets are particularly slow growing compared to her liver ones . 

Her scans indicated when some treatments were necessary but also a lot of watchful waiting too . We have all been very fortunate as we can compartmentalise this and get on with living .

She eats well but also tried her best to remain active with getting out and about . No specific plan of action .

But she did manage to get a balance . She was also open to intervention on the bases she did not want to become uncomfortable with symptoms from the lung mets so that was a factor for her to consider .

I wish you every success.

Court 

Hi Court,

Thankyou for taking the time to reply and sharing your mother’s diagnosis and treatment.

Iam still awaiting my treatment plan but I am also happy to be kept on a watch and wait surveillance to keep intervention to a minimum while I am still well .

How did the Cetuximab go, anything unpleasant side effect wise ?

It was more doable than chemo for sure . My mum was 67 when she started treatment and now 82 this weeks . She was 81 on Cetuximab so that was a factor but she managed 10 months and was still out and about . Unlike chemo it appeared less accumulating but more like the side effects took turns in turning up then receding. 
However she was in an antibiotic for her skin and special creams but as long as she was vigilant it was a good compromise. Think she was able to access it as part of covid protocols .

She did not want chemo at her stage . She was a bit disappointed when they took her off it .

She has a great oncologist and we trusted her judgement. She was happy waiting until she felt the sizes of the tumours were going to become problematic. But all in all I think it was a good deal as 6 months after stopping treatment she does not seem to have too many symptoms of the cancer yet .

We had a rough idea of the speed of growth of her tumours . Her original oncologist stated they can grown for a period , plateau for a bit and then start growing at times .  I think that’s exactly what my mums did and they treated her when they saw the pace of growth changing . Not saying everyone has that and I think that’s what her oncologist was good at treating individuals.

All the very best . Do you have plans for summer ?

Court