Small cell carcinoma in the bowel

[Danni1]

Hi there, my fiance aged 31 was recently just diagnosed with stage 4 cancer - this has come out of no where, and started out with some tummy pain and constipation just a few weeks earlier.

The tumor started in his colon, which has spread to his liver and some surrounding lymph nodes. The news got worse when we then learned it was also small cell cancer, which we were told is generally a lung cancer caused from smoking, and it is rare to get it elsewhere.

He has also never been a smoker and it is not genetic, so sadly this has come down to a case of pure bad luck. 

He has started chemo consisting of cisplatin and etoposide. Aside from hair loss he has had no side effects and not been unwell at all, which is good to see.

Given what I have read online about this nasty and aggressive cancer type, and the rarity of it, I am seeking to find out if anyone else has experienced /or knows someone who has had this type of cancer before and overcome it? 

We had just started planning our wedding weeks before we got this news..  We are determined and prepared to try anything.

[Katekat]

Hi @Danni1,

So sorry to hear of your fiance's diagnosis, that must have been such a shock to you both 

How are yourself and your fiance doing this afternoon?

I am glad to hear he has been well with the treatment so far and hope that this is still the case.

Has anyone else had any experiences with this type of cancer that could assist Danni?

Danni, you would have received a welcome message from us when you joined - did you get information on our Telephone Support Groups? I really think they might be a good avenue for both yourself and your fiance - we have one specifically for carers and one for those with advanced cancer. Shoot an email over to telephonesupportgroup@nswcc.org.au if you want to find out a little bit more - just say Kate referred you, they sit right near me in the office

[Laura125]

Hi Danni 

my partner is in the exact same boat 32years old and we have two young children.. can you shed any light how your going? Any solution/suggestions etc he starts aggressive chemotherapy tomorrow but we both feel so deflated and scared and at a loss 

thanks

[Danni1]

Hi laura,

I am so sorry to hear your partner has this. It is an awful disease.

I know how very overwhelming and frightening it is at the begining, and how scrammbled your mind is, and that you will just do whatever the doctors tell you.

but the best advice I can give, and I wish to god I knew what I know now.. is do your research. Knowledge is power. Download the series “the truth about cancer” by Ty bolinger. Its a 9 series documentary. Ep 1 & 2 are free on youtube.

there is unbelievable insight and I have gained so much knowledge from it. There are an aubundance of other therapies that can be done alongside conventional that have worked for so many people. 

I also strongly recommend getting hold of pure cannabis oil - needs to be high THC.

please do not sit and wait to see if chemo alone works, throw everything at the kitchen sink.

...sadly my fiance trusted the doctor too much. And waited around to see if chemo worked.

It didn’t. He had progression post the third cycle, all it did was deterioate him at a rapid pace, I lost him in August 😞 😞 

Bu the time he agreed to try alternate methods it was too late, he was far to ill to go anywhere or do anything else. 

[Laura125]

Hi Danni
I’m so sorry to hear that I am absolutely shattered for you and I cannot begin to imagine how you felt and are still feeling we too got the same “it’s rare and down to bad luck” how shit is that.. I’m sure your fiancé was an amazing guy and definitely far too young to be taken from you, I’m so so sorry I know you have heard it all before but I truly am.
we have started alternatives along with beginning chemotherapy, where in Australia are you based? I’m in Perth

[Danni1]

I am so heartbroken. I was supposed to marry him last weekend 😞 

It doesn’t feel like almost 9 months have passed, and he doesn’t leave my head for a minute. I miss him immensly, its just not fair 😞 

I ask myself “why?” Every single day.

I am based in melbourne. And I am super happy to hear you are doing alternate on the side, and on to it straight away. Your partner needs to keep his immune system as strong as possible.  There are so many good things out there, and I would give anything to rewind time to have been able to try more of the things I have since discovered. I have consumed myself in reading and research since his passing. 

If you are on facebook, there is a really good group called “cancer cures and natural healing research group” - I have found alot of comfort and so much knowledge from people all over the world in this group. There are some incredibly inspiring stories from people that were dealt the worst cases. And I have come across a few long term survivors of small cell in that group too! 

[Laura125]

Thanks Danni

I can only imagine how you feel and felt it’s not fair and it’s not easy and nothing anyone says will ever make it easier or the pain go away, I do hope you find the closure you need it really sucks honestly it does.

I can’t even Begin to imagine my life without my partner we have two young children (2&5) and this is a massive blow and has completely broken my heart I’m shattered I have hope but I’m scared. 

Im willing to try anything reaserch anything and keep him as healthy and prolong his life as much as possible thanks again

[Danni1]

I can honestly say from my heart - I know exactly how you feel right now. Its like entering a whole new world and its terrifying.

Yes do absolutely throw everything at it, do not just rely on chemo alone. We were told that platinum chemo had a 95% response rate the first time and would put my fiance in remission... he did not even get that chance. 

You will find oncologists wont advise or recommend anything related to nutrition/diet or anything “non FDA approved” - but absolutely do your research, and try anything and everything, you have nothing to lose