Spontaneous Regression

[CRguy]

Maia,

I have not heard from Marc since my Dad passed away, but if ever there was a "Coley's in action" kind of response ….
Marc's treatments and your posted reference are IT !

Being an occasional mini-klutz doing some construction projects … I AM up to date on my DPT boosters
(( FYI I rarely cut myself shaving, carving dinner entrees or using Class IV Laser surgery units or scalpels !….so THERE ! ))
SO ….. I take heart in viewing that as contributing to my not being back on the roller coaster … JMO and I am sticking to my story !

Thanks as well for all the recent, top notch reference and review posts you have provided.

Mega Cheers
CRguy

[lohidoc]

this is a shameless attempt to lure lohidoc out of the (frozen) Canadian bushes.

Yes Maia, there is no excuse for this. I shall have to write to your husband and ask him to control your internet activities.

For those of you who are interested: It has been a tough winter here in Northern Ontario, what the locals refer to as an "old fashioned winter". Which means arctic temperatures (-35C) from November on, without a break. Given my living circumstances it has been challenging.

I have been somewhat depressed this winter, which is why I have not written before. Financial troubles, work issues and of course cancer. I have felt myself deteriorating over the past month or two. In September I had radiation treatment to one of the tumours in my right lung, with good initial effect. However, in recent times I have experienced increased coughing, shortness of breath and fatigue. Obviously I thought this was all cancer related.

A scan last week showed however that the treated lung tumour is continuing to shrink and that there is significant radiation pneumonitis, affecting 30% of my lung tissue. So I am happy about that, even though the other lung tumour continues to grow and is now fist sized. Everything else, abdomen and pelvis, has remained unchanged. i'm not even sure there is active disease there.

Needless to say I have declined/ignored my oncologists advice, so no radiation at this time, and no steroids. I started my cannabis oil inhaler again with dramatic effect. An 80% improvement in all my respiratory symptoms within 48 hours. Just a bit of a cough at this time.

I have been slacking off with the Coley's, sometimes going for weeks without a session and obviously that has not helped (part of my depression I think). However, I am going to make some changes. I am planning to retire in May, and will then be able to focus entirely on the two things that matter - my Coley treatment, and my book. So the change in my prospects, the coming spring is cheering me up. Next scan July. We shall see....

[Laurettas]

Good job, Maia, it worked!

So happy to hear from you Marc but not happy with your news. I hope you are able to get on top of the depression and other problems and refocus your energy on tackling the cancer once again. You know that you have a grand cheering section here if you but make your presence known. Don't try to battle the demons alone, there are many here who would want nothing more than to offer assistance in whatever way we might be of help.

The temperatures sound daunting as well! Hope you have a lot of wood or whatever you heat with to keep your home toasty warm.

[Oneeyeddog]

So glad to hear you're doing pretty well, Marc. Your blog was one of the first I read after dx and I often check to see if any updates. So glad to hear you're working on a book. I remember reading your blog and thinking, wow, this guy can write, with humor, occasional darkness ... any way just to say best of luck with everything...

[BrownBagger]

Thanks for the update, Marc. It's been a rough winter, for sure, but it's gotta end eventually. Always encouraging to go out in the woods (on skis, in my case), and see the buds starting to form on the trees. And, now it's light when I get up in the morning and light when I leave work, so there's that. Hang in there. Nothing like spring to bring a little cheer into our lives.

As someone with inoperable lung mets, I'm encouraged to read about your (albeit limited) success with radiation. I imagine I'll be there at some point. For now, I'm on a reduced chemo regime (no more Irinotecan) for the time being. I was doing fine on the full complement (Iri, Erb. Xeloda), but my onc wants to see what happens when we cut back. I'm game, despite the risks, because I'm looking forward to a very busy spring, and I'll need my energy (if not my hair), to get the things done that I want/need to accomplish.

Anyway, all the best to you moving forward, pal. You remain in my thoughts.

[Guinevere]

Just wanted to say I was glad to see you posting. Spring's not that far away and I look forward to hearing about your book.

God bless ~
Guinevere

[rp1954]

Really miss your blogging, Marc. Hope that you can overcome the limits of situation, time and depression to get a consistent administration on the Coley's with some adjuncts to enhance your results.

[Maia]

Good luck with your letter, lohidoc. Haha. ; )

Seriously, Marc, I do know many here care about you, as I do, and one always feels better knowing what's going on with those we love (good, regular or bad news), don't you think. I apologize (a little, tiny apology) for this, but it's just one post after some months... I promise I'll behave (during some months).

I'm very, very sorry for all the other issues making life difficult for you; wish I could help. However, about your treatment, I think you have several encouraging news there -the radiation is still working over the dangerous lesion, the worrisome symptoms look more related to rad-induced pneumonitis that to disease; the r. pneumonitis will get better, hopefully, and you're improving with the cannabis oil. You know that I think it's not only helping you with the symptoms but also treating, at some degree, the lesions themselves (in any case, it's not hurting). And I'm still hoping for some abscopal effect from rad +CF : )

Hope that you can overcome the limits of situation, time and depression to get a consistent administration on the Coley's with some adjuncts to enhance your results.

*Nods* What have kept you here since July 2012 is mainly CF. And you have heard enough the phrases 'with some adjuncts', 'combination', by now : )
Sending my best thoughts your way! Keep strong.

[lohidoc]

Thanks all for your comments. It hasn't really been that bad, I am not normally prone to depression, and as the sun is coming out, it has largely lifted.

Yes Maia, I do think the Coley's has kept me alive, and I think it will continue to do so. It is not a miracle cure, but in judicious combination with other treatment modalities I think it can help in prolonged survival.

Thank you, oneeyeddog for your compliments. Coming from a professional writer I really appreciate it. But you'll just have to buy the book.

BB, if you are going to do radiation to your lungs, don't wait too long. If the lesions are small enough, SBRT or cyberknife are possibilities, associated with less collateral damage. Once the lesions are bigger you have to rely on the older external beam radiation. For example, if you have a 5cm tumour, it needs a 5cm radiation corridor (front and back) to get to the tumour. A fractionated dose is given, so as not to completely destroy the healthy tissue, but it also makes it less effective for the tumour. If the lesions are small you can give a large, lethal focused dose to the tumour and not have to worry much about the intervening healthy tissue. Also don't forget the options of cryo or RFA for small lung lesions. And finally, I think Maia started a thread some time back about a German surgeon who is very adept at doing laser (I think) resections.

Anyway, thanks again, I didn't think you guys remembered me. Maia, you are not forgiven.....

[Cb75]

Is there any benefit to the Coley's treatment when NED? Also, how small can the met be for SBRT? I asked my surgeon here in Toronto about it and he said mine were too small...all under 1 cm some were at the time only a few mm.

cb

[NWgirl]

Definitely not forgotten. I didn't want to intrude but I'm glad Maia did and drew you out. I check your blog periodically to see if you've posted - because I follow your progress and love the way you write. Hoping more sunny days find their way to you soon. Here in the PNW we're all getting a little stir crazy from all the wet and gray.

[jgall]

I'm so glad I logged in tonight! So great to hear from you Marc. I think of you often.

Maia...THANK YOU.

Julia

[lohidoc]

Is there any benefit to the Coley's treatment when NED? Also, how small can the met be for SBRT? I asked my surgeon here in Toronto about it and he said mine were too small...all under 1 cm some were at the time only a few mm.

cb

If I get to be "NED" (we can dream, no?) I would continue my CF. Twice a month for 6 months, then monthly for a year and then see.
About the lung mets - I think it would depend on the size - I'm no expert, but I would think at least 1 cm. And of course the number of mets. But - get an opinion from a radiation oncologist (I got mine from Princess Mgt). I would NOT expect a surgeon to be an expert on this....

[scattered edge]

I am so glad to see you post. I often wonder how you are doing.

It has been cold and snowy here in South Dakota, I'm looking forward to warmer weather and spring. I think I may have some depression issues going on.

Rosie