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Good to still see some familiar names! I am now 5 years in.

ThomasH's picture
ThomasH
Posts: 104
Joined: Jun 2016

I haven't checked in for a while on here, so I thought I would catch up a little.

I had a couple years NED according to my PET scans, but I found out in the summer of 2019 that my cancer was just hard to detect, not gone. I had my third surgery in August that year  and there are 40 some tumors that are only visible when you can actually look at them. They don't show up on ANY kind of scan. That messed me up for a while, I have to admit. I had a lot of anxiety with the idea that I had no idea about the extent of the progression in me, and the whole end of life thing. In August 2020 I became the first person in Canada to use psilocybin (magic mushrooms) legally, in a clinical way, to treat that. I've used them twice now, and as a treatment, it has made a big difference for me. It doesn't do anything for the cancer, but it has had a profound impact on the way I think about death.

i've been on active FOLFIRI every two weeks since I recovered from surgery in 2019, and I've just completed my 44th round of chemo this week. I have no idea how many rounds of FOLFIRI you can have? Any other long term survivors out there who are taking this?

I'm starting to see a few long term side effects creeping in, mostly in the form of less elasticity in a lot of tissues like the inside of my mouth, and in some muscles. A good joke can actually result in rips and blood blisters in my mouth. Again, I have no idea how common that is? Fatigue is always a factor. I sleep WAY more than I would like to. I've also lost more muscle tone than I would care to admit, just from a lack of activity. The chemo REALLY makes me tired.

Anyway, no complaints at all. I have had active stage 4 cancer for 5 years now, and I still live a fairly normal life in most ways. In lots of other ways my life has been both surreal and amazing in equal measure.

When I was first diagnosed in 2016, when you hear that what they are STARTING you on is palliative care, I honestly wasn't sure I would see my next birthday. I have seen another 5, and knowing that it is possible helped me get here. Being able to chat with survivors played a big part in that for me mentally, so I'm leaving this here for the next me who comes along.

Stage 4 may not be considered curable, but if that is the case, it is still possible to die with it, not from it. It can be maintained without progression for extended periods, and it can even have some improvements. I have been fortunate in my response to my treatments, and with my life in general.

I wish the same for all of you.

Thomas 

worriedson714's picture
worriedson714
Posts: 250
Joined: Dec 2019

Last month my dad was told he would need lifelong chemo and wouldn't be able to cure his rectal cancer which was heartbreaking to me . So I been wondering alot can someone really live with cancer for a long peroid of time and still have a somewhat normal life . Well now my dad's oncologist isn't so sure that his cancer has actually spread (long story) but this is still good to hear . Also my dad has been on palliative care from the start for neuropathy which has also worried me since palliative care and hospice are almost the same thing . Thank you for giving me some much needed hope as we continue to try and figure out if my dad is stage 3 or 4 . 

ThomasH's picture
ThomasH
Posts: 104
Joined: Jun 2016

I used to think palliative care and hospice were the same thing as well. My doctor explained that there are two types of care, curative, where they believe they can cure the cancer, and palliative which means they are trying to maintain things for as long as possible and provide the best quality of life they can. There is a tremendous range of wellness that is included with palliative, including people who have had good results with their treatments. There are quite a few people who are on lifelong chemo, and I hope your father gets good results with minimal side effects.

Thomas

worriedson714's picture
worriedson714
Posts: 250
Joined: Dec 2019

Then that makes more sense why my dad is on palliative also I saw you take alot of supplements what do you think are the most important ones ? Reason I ask my dad is 2 years into this 2 surgeries and now is stage 3 maybe 4 hoping the scan next week clears up staging . Has only had one round of chemo and radiation at the start I would like to get him on some supplements but he doesn't like to take supplements so trying to get him on at least some supplements so just curious on which you take that you view is most important . Those who have fought this fight so long like you have so much information just wanted to ask . 

beaumontdave's picture
beaumontdave
Posts: 1130
Joined: Aug 2013

Welcome back, when I saw the name, my thought went to a samuri avatar of some kind, so at least part of my memory is still working, lol. Glad you have adjusted to your situation, the psilocybin use is fascinating. I'd taken them several times when I was young, and never had a bad experience, just a sense of joy and connection to everything around me. Life is very much a game of perception and meaning, so it's good to hear that 5 years in, you have a handle on your life and expectations. I battled and worked through all my stuff [and my late wife's] for most of ten years, and came out clear, only to find my days were going to be defined by what limited activities I could do with minimal cartilage in my ankles and feet. The reduction in mobility brought all the expected results: loss of strength, muscle, energy, activity, connectivity. I'm not complaining, as I'm grateful to still be here and be me. I'm just noting the irony of a long, hard cancer battle survived with as good a result as one could hope for, followed by life slapping a whole new set of hurdles to cope with. I wonder if a session with ''magic mushrooms'' would benefit my outlook. I honestly feel pretty good about things, I live very much in the present, and am happy I live in this time where so much stuff comes to me in the way of the internet, television, books within a couple days of wanting one, etc. Imagine being part-time immobilized in say, the 1880's. The choices would be fewer and more barren in their nature. I'm glad you checked in ThomasH, your story gives hope to many, I'm sure, while tempering expectations with your descriptions of life under regular chemo sessions. Thanks for stopping by....................................................Dave

Trubrit's picture
Trubrit
Posts: 5421
Joined: Jan 2013

As you know, many folks disappear from the forum, and leave us wondering. So, it is good to hear from you and know that things are moving along - as in, you're still alive and kicking and enjoying some of the benefits of those magic shrooms. 

It is rather interesting that your tumours are hard to detect.  It seems you have quite a secretive body. 

Keep on keeping on, and don't be too much of a stranger. 

Tru

Diane_K's picture
Diane_K
Posts: 69
Joined: Jan 2019

Thank you, Thomas, for sharing this.  I am stage 4 and currently NED.  If that changes and my cancer returns I would consider the use of psilocybin, but I don't know if it is medicinally legal in the U.S.  Aleviating the fear of death by some degree would allow me to live a fuller life, especially if my cancer returns and my time becomes shortened.    

Annabelle41415's picture
Annabelle41415
Posts: 6694
Joined: Feb 2009

Thank you for the update and it's good to see your post.  It sounds like you have been through so much these last several years, but you have maintained it and continued to beat all the odds and we are glad to have you here 5 years later.  Wishing you the best in the future and we look forward to hearing from you again.

Kim

Tom M.
Posts: 174
Joined: May 2019

Thanks for the post Tom. I have completer 32 trearments of the same. For some crazy reason I respont well also. I will be getting scaned I guess in march or April. My last scan showed much improvement but not enough to get my liver resection due to lung nodules. My colon resection went well 2 years ago and I have not had a recurrance there. I make the nurses and patients laugh when I go for my treatments and that makes me feel good. I don't have bad sie effects from the treatments. I hope to posting on here for years to come.

 

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