CT scan

[lohidoc]

Had a CT scan 3 days ago. Some of you may recall I had a massive recurrence in June 2012, with more than 30 lesions in my lungs and two retroperitoneal tumours. I declined chemotherapy and chose an immune therapy which I cannot name as it is apparently illegal to use it. I have been using it now for seven weeks. My scan shows mixed results. The lung lesions are still there, and all have grown slightly, several mm for most. The largest one is 2.5cm. A large mediastinal lymph node mass (close to my trachea) has decreased significantly in size as has a lymph node mass close very close to the aorta in my chest. The retroperitoneal tumours are very close to my aorta in my abdomen. One has shrunk significantly in size, the other one shows no change.

So…. not quite the result I had hoped for. I had fantasized about a spectacular response and an entertaining visit with my oncologist, but cancer is not that generous. Nevertheless there are some positives. Given the explosive growth of my cancer between March and June I would have expected further rapid progress of my disease. That has not happened and I conclude that my treatment has had some effect. The three largest and most dangerous tumours have either shrunk or remained stable and that is encouraging.

This is not an easy treatment. It involves high fevers lasting up to three hours which leaves me wiped out. Although I am supposed to do this five times a week, I cannot mange more than three sessions. As I can only eat little during the treatment days I have lost 10 lbs over the course of treatment. I am beginning to gain some back however. In between treatments I feel well and occasionally invigorated. And I still have my hair.

So, in conclusion, this is not a miracle cure, but then there is no such thing. But I am encouraged enough to continue.

[Mona]

Lets hope that the treatment going to kill more cancer cells and shrink the tumors. Keep going.
Sending a lot possitive energy and prayers.

[Jack&KatiesMommy]

I know you don't know me but I have followed your journey as a lurker...and I am praying for you.
((HUGS)))

[KarMel]

Stable is a fabulous word. Yeah, gone or shrunk is better, but I' d take stable any day. Thanks for update.

[rp1954]

....is apparently illegal to use it.

I would think that people have rights (in the US) to do what they will with themselves. Rather administering docs have their state medical boards to deal with over long time periods, the FDA looks for advertising and distribution across state lines, local pharmacy laws may have something to say. For well educated, consenting/seeking adults, back off or STFU is what I have to say to authoritarian overreachers.

....I have been using it now for seven weeks. My scan shows mixed results. The lung lesions are still there, and all have grown slightly, several mm for most. The largest one is 2.5cm. A large mediastinal lymph node mass (close to my trachea) has decreased significantly in size as has a lymph node mass close very close to the aorta in my chest. The retroperitoneal tumours are very close to my aorta in my abdomen. One has shrunk significantly in size, the other one shows no change.

So…. not quite the result I had hoped for. I had fantasized about a spectacular response and an entertaining visit with my oncologist, but cancer is not that generous. Nevertheless there are some positives. Given the explosive growth of my cancer between March and June I would have expected further rapid progress of my disease. That has not happened and I conclude that my treatment has had some effect. The three largest and most dangerous tumours have either shrunk or remained stable and that is encouraging.

That's encouraging. Got any immune parameters or CBC values we might compare with others' other immune therapies? Might be interesting if one could mix and match.

Although I am supposed to do this five times a week, I cannot mange more than three sessions.

Makes me wonder about prior technique and support levels.

....encouraged enough to continue.

Best of wishes. Thanks for including us.

[NWgirl]

I just finished reading your entire blog. Wow. You are an amazing writer - so beautifully written. It reads like a novel - I only wish it was fiction.

I know FOLFOX is a horrific regimen - and I didn't like FOLFIRI much better. But I found Avastin and Erbitux to both be pretty easy to tolerate. Have you considered these drugs and are they available to you? You are obviously well educated and have had ample time to read about treatment options, so I don't mean to suggest the obvious. It's just that I've been on FOLFOX, Xeloda, FOLFIRI, Avastin, Vectibix and Erbitux (not all at the same time of course) and found both Avastin and Erbitux to be effective and fairly easy to tolerate.

Whatever direction you take, I wish you luck. You captured in your blog how I imagine all of us feel. There were so many times I thought "that's exactly how I feel!" - but you communicated it so much more eloquently than I would ever be able to. I'm sure you are an excellent doctor, but you are an equally talented writer. Thank you for sharing your blog with us.

[so-scared]

I also read your blog. Thank you for sharing it. I agree with the others, you are a wonderful writer!!

I respect the fact that you are trying something unconventional. My husband is also but in addition to chemo. We talked about it and the bottom line is that the chemo approach will not cure him and may not buy much time so why not try something else too. In our experience, your CT would be considered a positive response. That is wonderful! I hope this works out well for you!!

[lohidoc]

Thanks for all your comments.
rp1954: I gave the question of illegality less than one second's thought before deciding to ignore it. I am entitled to kill another person if I feel my life or that of another is at risk, so if mainstream medicine offers me nothing other than my demise I feel entitled to use whatever treatment I choose. But some very good and altruistic people have helped me access this treatment so I have to be discrete. My white cell count has remained within normal limits during this treatment.
Prior technique and support levels: Because this is illegal I do this entirely on my own, with only email support from the scientist who developed the protocol. It's been a learning curve.
NWgirl and scmidwife: Thank you for your compliments. I am not interested in any chemo. It would be palliative only, I am looking for a cure (or will die trying!).

[CRguy]

But I am encouraged enough to continue.

All anyone could ask of themselves. I agree with Belle, your blog is an amazing tribute to who you are and pays homage to what you share with us.
Thank you my friend.

Sending encouragement and best wishes
CRguy

[NWgirl]

Understood. I truly wish you the best of luck with this treatment and I'm glad you are able to give it a try.

[fritts44]

Sounds like a tough treatment, but it also sounds like it's effective on the worst tumors. Hoping the treatments will be more tolerable & will finish off the job for you!

[Maia]

I'm so happy to read this! I think you're having very good results -this is not what you could have expected, given how things were progressing. Low and slow may be the way for you to find your path to cure or manageable chronic condition.

if mainstream medicine offers me nothing other than my demise I feel entitled to use whatever treatment I choose.

I couldn't agree more. I'm just a woman accompanying my dear friend (who is like a sister/mom for me), who has lungs mets at the moment; she thinks like you, and I totally support her.
I've read all you blog, I feel like if I know you a bit. From the bottom of my hear, I'm happy to hear you're doing well. : )

[fritts44]

Hi doc. I just finished reading your blog. Your writing is mesmerizing & its so easy to lose yourself in it (ehhh -- I just fed those kids yesterday anyway; they should be fine ).

I'm so glad you're doing the blog and sharing your talent. Thanks for sharing with us!

[SkiFletch]

Damn doc, I'm without words after reading this and your blog. My heart breaks for you man and I wish I could do something to help.

[tammylayne]

WOW. That's all I can say.

As others have said before me, your blog is amazing. You touch on things that only those of us caught up in this drama can understand, and you say it with such emotion - precise, accurate, raw emotion.

I truly hope you are onto something with this treatment plan. When it comes to the human body, I truly believe that anything is possible, and have extreme respect for anyone strong enough and willing to go at this from a different angle.

I also live in Ontario, southern Ontario now but I was born and bred in Northern Ontario. I can see, hear and taste of what you speak. You took me back 40 years with your pictures and descriptions of the land around you. Thank you.....

Wishing you so much strength and good things that it hurts me to breathe......