Diagnosed with stage 4 cancer - the long winding road it has become

[Cois]

I don't want to post this but received the dreaded phone call 23 November 2018 with the confirmation.
I have been diagnosed with colon cancer. They found a 10cm tumor

Update: CT Marked the tumor as 14cm's. The cancer was found to have spread to some lymph nodes, my spleen and to my liver.

 

Update 2:  Primary Tumor was removed November 2019.  Liver was ablated to remove the tumor in 2020.

 

Update 3:  Went in for a checkup and they found new tumors.  Spread to my peritoneum.  Surgeon removed as much as he could September 2020.  Removed 40 cm of the small intestine and another 50 cm of my colon.

 

Update 4:  Still waiting for Momentum health (they will take you on a ride) to approve the needed chemo therapy.  We moved onto a higher option, but have not received any feedback from Momentum health.

 

9 February 2021 Started chemo session (I stopped counting).  It is a oral medication  taken once per day.  The worst thing that can happen is death... and a loss of all minerals in the body resulting in severe cramping.  I need to do a blood test before the next session to see if my liver will be able to handle the chemo.

Update: The side effects of the chemo was severe and thus halted.

6 April 2021:  Chemo treatment with Stivarga has been stopped.  I had a sharp increase on my CA 19-9 count and had a severe drop in Potassium and liver functions, prompting intervention from the oncologist and the treatment team.

July 2021: Started FU5 treatment. This is the second time that we are going to try this treatment even though the first round of treatment almost killed me and caused a severe problem with my liver. The last round did not effect my cancer counts at all so not sure why we are going to try the same treatment that did not work again.

September 2021: Received radiation therapy on my liver due to a new detected tumour that has formed. It was a rough 10 sessions because of severe nausea and vomiting. The vomiting caused the reduction of the enamel of my teeth causing severe pain in drinking and eating most things.

July - October 2021: Experienced a blockage the past few months leading to rapid weight loss and inability to gain weight. I have landed in the hospital twice a week due to severe weakness and inability to walk even short distances. The GP at Wilgers oncology referred me to a surgeon after I requested another opinion. I was referred to Dr Charl van Niekerk.

Sadly the spread of the cancer was severe and I am unable to be operated on. The Oncologist should have transferred my case to a surgeon on the first sign that there was a blockage. Dr Viljoen at Wilgers should also have followed up on my case as he was the attending surgeon at Wilgers Hospital, but he did not do any follow-up consultations.

The next steps will be an Elemental diet, a liquid diet, and then a port to enable me to get IV feeding going home. The elemental diet was chosen to lessen the strain on my system and to enable the nutrients to bypass the tumour that formed between my stomach and upper intestines. 

We have started looking into a new oncologist as Dr W van Zijl became distant and was absent during the last hospitalization, even after Dr Botha requested a consultation with him. He did not create a reference letter on request and Dr I Botha wrote the reference letter for me to get surgical assistance. 

As per request of a lot of members and other people... here is my BackaBuddy page

https://www.backabuddy.co.za/champion/project/francois-marais

We have created a Investec account due to the high fees of Backabuddy (https://www.backabuddy.co.za/fees)

the fees on the Investec account is marginal and Managed by PSG.  Statement will be available on request to keep this transparent.

 

Account Holder: Mr FH Marais
Branch: Investec Bank Limited
100 Grayston Drive,

Branch code: Sandton 580105

Client account number: 50017804320

Type of account: Savings

Edited October 22, 2021 by Cois

[Dexter-morgan]

Sorry man, my Sani buddy recovered and is now more active than ever, all the best for the road to recovery.

[gummibear]

I don't want to post this but received the dreaded phone call yesterday with the confirmation.

I have been diagnosed with colon cancer. They found a 10cm tumour

 

Currently, I am still a little shocked, but it is one of those things. And all the signs were there the past weeks.

 

I have a bit of discomfort while cycling and toilet breaks are more frequent, so will do shorter distances.

 

But are there any risk, can I cause more damage? I need to do something to take my mind of things and cycling will be one way.  The specialist is very hard to get hold of.  And I do not have a treatment plan as yet.  I know there is a wealth of knowledge here.  So this is not to get sympathy or anything.  I just need to know will I still be able to cycle?

 

I know during chemo I will not be able to and after the operation to remove the tumour there will be some downtime.  But before all this takes place.  Will I be able to ride...

Eish sorry to hear.

 

I think you should talk to your oncologist about it.

 

When my wife had breast cancer her oncologist had no problem with her jogging so i don't think there'll be an issue.That said it's 2 totally different problems.

[RocknRolla]

Sorry to hear man. I hope for the best possible outcome.

[Bloukrans]

Best wishes to you.

You are in my thoughts

[SwissVan]

Sorry to hear Cois

 

Agree with what Gummi said 100%

If your Specialist is hard to get hold of, his rooms should be able to provide some sort of guidance.

 

Otherwise maybe its an idea to see someone else

 

All the best

[Jacoo]

Very sorry to hear man. Dont know if its your cup of tea, but really check out the effects of cannabis. More and more studies have shown that both cbd and thc really does help slow down or reverse tumor growth (colon cancer is on the list). Its definitely worth looking into. My uncle had cancer that had progressed rather far, and after using cannabis oil since diagnoses he has been in remission for around 5 or 6 years now. Im obviously not saying its a miracle cure, but ive definitely been somewhat swayed of my skepticism after checking it out.

[TheJ]

Very sorry to hear man. Dont know if its your cup of tea, but really check out the effects of cannabis. More and more studies have shown that both cbd and thc really does help slow down or reverse tumor growth (colon cancer is on the list). Its definitely worth looking into. My uncle had cancer that had progressed rather far, and after using cannabis oil since diagnoses he has been in remission for around 5 or 6 years now. Im obviously not saying its a miracle cure, but ive definitely been somewhat swayed of my skepticism after checking it out.

 

http://ukhealthtoday.com/2018/11/25/doctors-cant-take-it-anymore-oil-killed-93-of-colon-cancer-cells-in-just-2-days/

[gtr1]

Hi Cois. Tough topic, and lots of possible answers. So will give you my take on it and what I gave read and experienced.

 

I was diagnosed recently with Lymphoma, so can relate. I even told Dr to delay treatment by a few weeks so I could ride W2W.

 

So before treatment I trained and raced as normal. Actually won a race a day after been told I had the cancer. Was more worried about potential chemo than the cancer :-(

 

My treatment in the end was not chemo, and undergoing immunotherapy. Not much research available as fairly new treatment compared to chemo.

 

When I saw dr, he said I should be able to carry on training and racing while on treatment, but I would experience fatigue especially day after. Initially I carried on as normal, but after 2 treatments, I found that my HR elevated easily, and felt like it was thumping in my chest when doing any intensity. Have since cut back, and just ride for fun when I feel like it. Keeping hr down.

 

What I read on chemo was that exercise is good during treatment, and can even help with recovery. Once again I think moderate exercise. Side effects of chemo way worse than immunotherapy. So will depend on what treatment dr goes for.

 

Tomorrow is my final treatment...........I hope.

 

PM me if you want to chat a bit more.

[Cois]

Hi Cois. Tough topic, and lots of possible answers. So will give you my take on it and what I gave read and experienced.

 

I was diagnosed recently with Lymphoma, so can relate. I even told Dr to delay treatment by a few weeks so I could ride W2W.

 

So before treatment I trained and raced as normal. Actually won a race a day after been told I had the cancer. Was more worried about potential chemo than the cancer :-(

 

My treatment in the end was not chemo, and undergoing immunotherapy. Not much research available as fairly new treatment compared to chemo.

 

When I saw dr, he said I should be able to carry on training and racing while on treatment, but I would experience fatigue especially day after. Initially I carried on as normal, but after 2 treatments, I found that my HR elevated easily, and felt like it was thumping in my chest when doing any intensity. Have since cut back, and just ride for fun when I feel like it. Keeping hr down.

 

What I read on chemo was that exercise is good during treatment, and can even help with recovery. Once again I think moderate exercise. Side effects of chemo way worse than immunotherapy. So will depend on what treatment dr goes for.

 

Tomorrow is my final treatment...........I hope.

 

PM me if you want to chat a bit more.

 

Thanks for this.  A glimmer of hope.

 

I am a bit anaemic, so slow and steady. Still have to meet with the oncologist.  Just did the scope, and still need to be referred to an oncologist.

 

And thanks for all the well wishes.  Means a lot

[PhilipV]

Sterkte Cois.

I

No advice, only wishes that you knock this one out of the park.

[madmarc]

I don't want to post this but received the dreaded phone call yesterday with the confirmation.

I have been diagnosed with colon cancer. They found a 10cm tumour

 

Currently, I am still a little shocked, but it is one of those things. And all the signs were there the past weeks.

 

I have a bit of discomfort while cycling and toilet breaks are more frequent, so will do shorter distances.

 

But are there any risk, can I cause more damage? I need to do something to take my mind of things and cycling will be one way.  The specialist is very hard to get hold of.  And I do not have a treatment plan as yet.  I know there is a wealth of knowledge here.  So this is not to get sympathy or anything.  I just need to know will I still be able to cycle?

 

I know during chemo I will not be able to and after the operation to remove the tumour there will be some downtime.  But before all this takes place.  Will I be able to ride...

Sorry to hear and i hope you make a full recovery - I suppose in todays world this fear sits in the back of everyones mind - lead a healthy lifestyle and Bang! the big C rears its head.

 

If I may ask you to share - what are the symptoms of this type of C - maybe it would help convince others to get tested

[Cois]

Sorry to hear and i hope you make a full recovery - I suppose in todays world this fear sits in the back of everyones mind - lead a healthy lifestyle and Bang! the big C rears its head.

 

If I may ask you to share - what are the symptoms of this type of C - maybe it would help convince others to get tested

Thanks MadMarc

 

The symptoms was baffling.  Sorry for the overshare, but maybe it will help someone else to see the warning signs.

 

I had a prolonged time of stomach problems.  Runny stool, but I did account that to stress as I started a new job in April this year, and the problem started in July.

I took an antibiotic and that helped, but as soon as I stopped drinking the antibiotics it returned.  The other curve ball was that the city of Tshwane or (however you spell that) sent out a notice of problems with the water supply so that was a bit of false hope.  I started seeing some blood after cleaning, but with the amount of times that I had to visit the loo, bleeding was prone to happen.

 

I was feeling weak and at the height of it, I could not cycle more than 20 km without having to make a dash to the nearest loo.

 

I started showing blood and mucus in my stool, and that was when warning bells started sounding.  I could not get to a Dr as we were busy with a huge project at work, but the one Tuesday morning, I could not take the pain anymore.  We did not have water at the office, and I thought I injured my bladder holding out to take a wee, and then bumping into a table.

 

So on the visit the doctor pressed here and there, and I told him of the blood, and he pressed some more and I almost pooped his table from the pain.  He found some blood in my urine, but it was nominal.  Gave me some antibiotics and pain meds (the pain meds does not help for the pain) and off I went and was to see him on the Thursday.

 

So Thursday breaks and there is a crap load of blood in the loo.  So decided not to skip the doctors visit.

 

Get there, he asks me a few questions and gives me a letter to go for a colonoscopy.

 

Few other details that pissed me off at the doctor, but went for the colonoscopy last week.  While I was still in recovery the Dr spoke to my wife and scared the **** out of her (I do not have medical aid) and his first words were, "it is going to cost a lot of money"

 

So if you see any blood, where there is suppose to be no blood...  GO SEE A DOCTOR.  Do not take a chance with it!

[Dadbod Racing]

Hi Cois, 

 

Sorry to hear this, I hope you make a full recovery and are able to get back on your bike sooner rather than later!

[Long Wheel Base]

Sorry to hear. I am glad that you have such a positive attitude about it. LA came back a lot stronger after he finished treatment. Sure, he doped but that aside(he would probably still have won if he didn't) he stayed positive and that enabled him to stay motivated. All the best with the treatment and keep us posted.

[cat-i]

Sorry to hear

 

It will be hard. My brother said some days it was hard driving to the office. One of the dudes in a previous cycling group cycled and ran throughout his treatment, but it was also very hard. A positive attitude like yours should help a lot.

 

Your oncologist and your body will tell you what is possible.

 

Wishing you a speedy recovery and thinking of you during this time.