News Roundup

Welcome back to more news and pictures intended for your entertainment and edification.  Good luck finding either or both.

First up:  I got a call from Dr. D informing me of the results of the B-RAF mutation test.  I lose.  So much for trying to feel lucky.  So, Vemurafenib is off the menu since it won’t work for my lumps.

Moving on to the proposed IL-2 direct injections, little has changed except that a few emails have passed back and forth between Dr. G‘s assistant and myself.  When we first mooted this treatment P and I had the impression that I could start within a week or two.  That was six weeks ago and one of my lumps had grown to about 8mm in diameter – see photo section below.  I should have a date for the first injections Real Soon Now but that day could still be a week or two away by which time it would have grown some more.  After that I would have to wait a little longer to know if the injection was effective – it is possible that this won’t work on me.  As a result, when we saw Dr. M today I got the thing taken out, along with a couple more that were a little worrying.  It was quite a chunk of meat, let me tell you.  I took a short glance at the procedure in progress and abandoned any idea of ever becoming a surgeon.

It was my intention to take up Dr. Ohashi’s offer to supply her with some tumour tissue so that her team could culture some of my T-cells.  However, I left it too late to figure out all the ins-and-outs involved.  There are normally quite a lot of bureaucratic hurdles to clear before I can start FedEx-ing bits of myself across the continent, although she was kind enough to offer  to fast-track this if I could get the machinery going at my end.  Sadly I couldn’t find the right buttons to push so this will have to wait for another day and another lump.

Both Dr. D and Dr. M confirmed that I was the sole subject of a meeting of the two of them plus Dr. G held on April 30th.  The intent was to try to figure out a course of action between them so that I would have a more coherent picture of my treatment options.  However, as Dr. M admitted, they really don’t have a very coherent plan.  My particular case is a little unusual, mostly in the sense that I’m still alive and generally kicking after four years with only a mangled leg to show for it.  Dr. G has scheduled me for another PET scan in early June to make sure things have not spread beyond the leg.  When (and if) they do then Dr. D can do her best to remove the pestilence by chemical means and perhaps I will be treated to some cultured T-cells by Dr. Ohashi, but until then all we can do is to keep more or less treating the symptoms.  Sometimes this really wears me down.  When a new lump comes up it is a bit like being given a random electric shock.  There is nothing I can do to prevent the shocks or to control when they come.  This can lead to a real sense of helplessness, and that was what got me interested in the book Learned Optimism by Dr. Martin Seligman.

Animal research suggests that about two thirds of the population will give up trying to improve their situation if they are subject to random, uncontrollable annoyances.  However, the remaining one third will never give up:  they do not learn helplessness but manage to remain optimistic.  Dr. Seligman explores some of the implications of this for humans.  There are several interesting online tests one can take at the Authentic Happiness website.  I tried several and discovered, to my total shock and amazement, that I am actually quite the optimist.  The results of the Optimism test suggests that I believe good things have permanent causes, that bad things are the result of transient conditions, and that a failure in one area of my life has no particular bearing on any other areas.  These are all signs of optimism and optimism is good for your health, in general.  I guess I’m happier than I realised.

Exactly how my anxiety fits into this I’m not sure but I’m not going to let that get me down.  I have now convinced myself that taking Clonazepam to help regulate my mood is no worse than taking heart or thyroid medication.  Maybe I will be sufficiently enlightened, eventually, to be able to rise above my mental afflictions but for now I’m content to keep taking the tablets as necessary.

I am reliably informed that one of my good friends has just had a suspicious mole removed from the foot.  My thoughts and best wishes are with you and I will be most interested to hear the results of the pathology report.

In other news:

• Two items on ocular melanoma:  the importance of eye colour, and a test to help predict if the cancer will spread.
• The dangers of tanning do not seem to be getting through to people.  The CBC reports that people are still not using sunscreen effectively, and Science Daily notes the increasing rates of melanoma among younger people.  If that’s not enough to disturb you, here’s a mother accused of taking her 5-year old to a tanning salon and a sermon on the subject from the Melanoma Research Foundation.
• There is new understanding about cell signalling which may help to explain why the B-RAF inhibitors behave in some rather odd ways.  Other researchers have been performing an intensive study on the entire genomes of 25 melanoma tumours with some potentially interesting results.
• Finally, CD-47 protein antibodies may help to shrink all sorts of tumours.  That would be Very Good.

Photo Section

A couple more leg shots for those of you with a fetish for the macabre.

Octolumpy: the scene in early February 2012

Big Evil Eye

News Roundup

Well, here I am again on the 4th anniversary of my first major surgery.  Considering the dire prognosis at the start of this whole saga I am doing astoundingly well.

A week ago I had my annual general checkup.  Other than my little melanoma problem I seem to be in very good health.   It was a rare treat to visit my GP without having to get a bunch of stitches removed, although I’m not sure I’ll ever look forward to the prostate exam.

When I saw Dr. D a while back she was about to send off some sample tumour tissue for testing to see if I have the B-RAF genetic mutation. As you will doubtless recall , Vemurafenib (formerly PLX-4032) only works for people with this mutation so I am trying hard to feel lucky.  It was almost two years ago that we first talked about doing this but for various reasons it was not practical to follow up until now.  Vemurafenib is still available in Canada only for clinical trials so I am now enrolled in one.  The lab called to say that I should have the results of the test Real Soon Now.  Even if I am eligible to proceed it is unlikely that I will start a course of the drug at present.  However it would be good to know that there was a BFG that could be used if and when I need some serious ammunition against the cancer.

No news on the Interleukin-2 injections yet.  I dropped an email on Dr. G asking for an update because I have one lump that could use some attention.  Since Dr. Ohashi (first mentioned in a posting  a few weeks back) is interested in acquiring some “fresh” tumour tissue I could get Dr. M to dispatch the lump to her when I see him next week.  One way or another I’d like to get the thing dealt with, although it doesn’t bother me as much as it used to and there is only the one.

Speaking of not being bothered so much, my state of mind has improved greatly since the last posting.  Partly, I think, this is because we have a plausible plan that avoids the death of a thousand cuts on my leg.  The fact that spring is busting out all over is also very helpful.  However, I also think that Dr. C‘s notice positive things regime is helping a lot.  I have been recording good stuff  faithfully on a daily basis for about a month now and life does seem pretty good.  OK, OK:  I know many of you will be like “That’s what I said two years ago”, but at least I seem to be getting there.  Patience please, my friends.

Another factor in my improved state of mind is related to a book I’ve been reading: Anticancer.  The author, Dr. David Servan-Schreiber, managed to survive 18 years with a brain tumour.  His medical treatments were entirely conventional but he credits much of his longevity to a good diet (mainly low sugar and lots of anti-inflammatory foods), regular exercise and a calm state of mind.  The book contains many references to published academic works and studies that support his thesis.  It turns out that (mostly thanks to P) I have been maintaining a regime not far removed from the one recommended.  We have spent the last couple of weeks fine tuning the diet, for example allowing the green tea to brew for 10 minutes and then drinking it within an hour.  There is no guarantee that any of this will help me, of course, but it is empowering and comforting to feel that there is something I can try.  Even if the melanoma eventually kills me this will probably improve my general health.  It’s worth a try.

Supporting all this is my general immersion in Buddhist dharma and related inspirational writings.  I often find the daily musings at Tiny Buddha strike a chord in me.  Take a look:  there’s a lot of uplifting stuff there.

On the melanoma beat:

• A Yervoy (ipilimumab) story that is close to home.  It seems that a lot of family doctors don’t recognise a suspicious mole even when it is drawn to their attention.  However, as the subject says: “You’ve gotta have hope”, and at $120,000 for four doses I hope there will be help with the bills.
• Melanoma rates are rising steeply in young adults.  Here’s more.  Please take care of yourselves!
• Dandelion tea has anti-cancer properties.  Yes, it is part of my diet now.  Thanks to Dr. Danny and Aunt Sylvia for the pointers.
• Melanoma uses cloaking protein.  This may help explain why the immune system has such a hard time killing it.

In other news:

• Some hopeful news regarding lung cancer.
• A technique involving priming T-cells with cancer stem cells is showing some promise.
• Nanostars are getting in on the act too.  Thanks to Dr. Danny for this one.
• Optimism is good for your heart, apart from anything else.  I’m working on it!
• The Gift of Anxiety – an example of Tiny Buddha material that makes sense to me.

Hang in there.  I am.

It has been only a week since my last posting.  Usually a short interval like this means something has unexpectedly unraveled but sometimes a bunch of relatively benign things happen and thus it is on this occasion.

P and I recently spent two days at a workshop entitled Making Friends with Death led by the author of the eponymous book.  It was useful and comforting, in an odd way, to be able to spend time with forty or so others who want to reconnoiter the territory ahead of time.  The central message from the workshop is to see life as being completely interwoven with death in every moment.  Life is the process of dying.  That may sound very sombre but I think it helps me to see my death as simply the end of that process.  Nothing special.  In the meantime I hope to be able to live better.  The Raptitude blog has a good posting on this too.   The workshop was a little short on practical content (e.g. meditations or contemplations that would help) but we both felt it was worth the effort.

While we were at the workshop my long time friend, Mr. K.O’C of Calgary arrived for a short stay.  It has been a few years since we were last face to face.  As a result a lot more beer got consumed than usual and I had a good excuse to get out and show off the scenery around here.  It was a great week and really got my mind out of its rut.  We did pretty well on a pub trivia quiz too, which was quite unexpected.  Perhaps it helps to be sozzled.

Then there was the visit to Dr. C, the psychiatrist.  I was feeling a bit sad that day, a feeling we spent some time exploring.  She feels quite comfortable with my rather heavier use of Clonazepam.  The fact that I am concerned about the amount I take is, from her point of view, a Good Thing since it means I am unlikely to develop any sort of dependence on it.  We did discuss the possibility of medical marijuana too (first mooted on this blog some years ago) but decided this is not the time.  A party to look forward to, then.  She also made me write down and highlight one of my immemorable utterances: “As things come along I will manage reasonably well.”  This is quite true, in general.  For the next little while she wants me to pay particular attention to positive things, especially notable or unusual ones.  So far I’m managing to average about three per day.  It was a good visit and I felt much lighter when we left.

All of which brings us to yesterday and an appointment with Dr. G.  Given the current state of my leg (which is mostly held together with sutures and sticking plaster) I was expecting him to offer another limb perfusion or possibly an amputation.  Much to my surprise he suggested something quite different:  Interleukin-2 injected directly into melanoma lumps.  I asked him about something similar about a year-and-a-half ago.  Apparently this was a fairly hot topic at a recent conference about melanoma so he is trying to make this treatment available here.  The idea is to provoke a heightened immune response right where it is needed.  50-70% of patients respond to this, which is to say that the injected lump goes away and sometimes others shrink as well.  If this works on me, that works for me.  Not having surgery and sutures to look after almost every month would be a pleasant change of pace.  Whether or not this will have any effect in the long term is still unknown but Dr. G seemed quite upbeat about drugs “in the pipeline”.

So it is that this posting ends on a more positive note than has been the case in the recent past.  Don’t expect me to turn into an optimist any time soon but I keep working on it.  Someday I may surprise you – and myself!

Stay well, everyone.

News Roundup

My leg is once more held together rather tenuously with the aid of a whole bunch of sutures, Steri-strips, and a compression bandage.  Counting the three previous excisions which had active margins I now have nine new holes.  I have to raise my leg above stomach level whenever I drink to avoid getting the carpet wet.  Rather more Clonazepam than usual has found its way into my system since my last posting and I haven’t been feeling particularly chirpy.  However, I have managed to get through the last week or so with appetite more or less intact, a good night’s sleep most nights, and no complete meltdown into a gelatinous thumb-sucking blob feeling sorry for myself.  Life could be a whole lot worse.

Dr. M & co. did not make much fuss over me.  They left it up to me to decide whether I wanted to do all 9 at once or in stages so I decided I’d rather have it over with.  The surgery is not the part that bothers me, although on this occasion we just about maxed out the amount of local anaesthetic I’m allowed for my body mass.  What does alarm me is simply the number of these things showing up.  It will be two more weeks before we talk to Dr. G about the possibility of another limb perfusion and probably another two or three beyond that before anything happens.  Not that this is dicing with death.  All the lumps are very small, almost all are below the knee and there are no signs of trouble elsewhere.  The crazy thing is that, having searched diligently all over the inside of my skull, I cannot figure out precisely what is worrying me.  However, a few new insights and thoughts which may interest you (or not) have presented themselves.

Firstly, I think I have allowed myself to get comfortable with the status quo that seemed to exist up to November.  Everything seemed very manageable and almost ignorable.  Now I have to get used to a new situation.  Was I “in denial”?  Is it a bad thing if I was?  I don’t know, but I did have a pretty relaxed couple of years for which I am grateful.  There is an interesting mental twist to the present shakeup:  it has clearly illustrated the temporary nature of the cancer in the sense that it is not a single, monolithic illness.  This makes it easier to accept what is happening because it can be done in pieces.  This is no mere semantic subterfuge.  Looked at from this new point of view I can accept that I am sick and that I have to treat the illness, but I don’t have to accept that I’m going to die from it until much later.  Psychologically that looks like an easier sell.

Speaking of psychology, I have made strenuous efforts to control my state of mind using mindfulness meditation.  It does work … up to a point.  Several things have become apparent in the last few days:

• My efforts to deal with specific issues (e.g. being comfortable with death) have met with limited success.  This stuff is really hard to do, for me anyway.
• Partly as a result of this focused approach I am spending too much time caught up in the future and not enough being present right now.  This is absolutely fundamental and I’m going to have to put more effort into it.
• It looks as though one of my ongoing problems is Generalized Anxiety Disorder, which does a wonderful job of muddying the waters.  As I said earlier, I don’t really know why I’m getting anxious; all sorts of insignificant things seem to set me off, most of them nothing to do with the cancer.

As a result of all this I think I am going to have to break down and take more Clonazepam.  This is not at all what I want but it appears to be the pragmatic solution, at least for now.

• More good news for mice with melanoma:  a vaccine from the people at the Mayo Clinic
• Apparently DCA, an orphan generic drug works well against the very deadly brain cancer glioblastoma.  Well, there’s hope it might work for other cancers too.
• In this report a combo Ipilimumab/radiation treatment seems to have worked well against melanoma.
• Sunitinib, a drug already used to treat kidney cancer, shows some promise in dealing with melanoma.
• There is another study showing that meditation does good things for the brain.
• Here’s a more positive take on anxiety and what it is trying to tell us.
• And finally there is this.  You just have to read it.

News Roundup

The stitches are out, the pathology report is in.  All six excisions (for seven lumps) were positive.  Furthermore, three of them had “active margins” which means they will have to cut some more out to get rid of the remaining Bad Stuff.  In addition I have two new lumps.  From this point of view it could have been a much happier day.

I’ll be going to the melanoma clinic in about two weeks and will probably get this lot sorted out but it is really beginning to look like the limb perfusion has run its course.  At the beginning of next month I’ll be seeing Dr. G and it seems likely that he will propose a second perfusion.  If things proceed the way they did last time around the operation will probably happen in mid to late April.

Now the good news.

First, except for a few seconds right after the doctor gave me the news, I haven’t panicked.  I’ve been feeling tense for some weeks now but my mindfulness practice has taken care of almost all the worry.  Only a couple of times have I resorted to extra Clonazepam and then only in small doses.  I consider this Real Progress.  In addition I noticed a bad habit while I was driving home.  Back in January I commented on the “Mommy, kiss it better” feeling.  Today I caught part of my mind trying to get me to say “I’m scared” but instead of playing along I realized that this really is just a habitual response.  It will take a little longer to stop doing this to myself altogether but I think I’m getting there.

Second, assuming that the melanoma is still confined to my leg (and I have every reason to believe this to be the case), I have a pretty good idea of what to expect in the coming 2-3 months because I’ve been there and done that.   The hospital stay is likely to be shorter than it was last time because there should be no need for skin grafts.  I’m also hoping it won’t result in as much discomfort because they won’t have to shift a muscle sheath around.  We have a much better handle on how to feed me (given all my food intolerances) so I am less likely to be starving by the time I go home again.  I’m not at all looking forward to the ordeal but I am much better prepared now.

Meanwhile I continue on my mindfulness path.   Apparently Dr. W.R of New Brunswick has been recommending my musings to some of her clients because

It is an outstanding real-life example of how to use mindfulness to cope with anxiety. It’s good because it is so clearly written, has lots of humor, shows realistic coping (rather than a perfection than no real person can attain), and reflects the experiences of an actual person.

Thank you for that!  I especially liked the “actual person” bit:  it’s good to be recognised as such.  P and I have just signed up for a two-day workshop on Making Friends with Death which I hope will improve my State of Being even further.  This probably sounds like a very gloomy way to proceed but our feeling is that the sooner we get this sorted out the happier we will be for the rest of our lives.  In collusion with my meditation instructor I have been practicing a contemplation of death for some weeks now.  I fear it a lot less now that I did a year or two ago.  Do any of you think about this stuff?  I’d be interested to know.

In the obituaries section I regret to announce the death of Mr. I. van Seters of Alberta.  There is a brief announcement from his parents on his blog.  He did pretty much everything possible to beat his melanoma and succeeded beyond all expectations, an inspiration to the rest of us.

In other news:

• Accolades for Zelboraf: live an extra 7 months, if you’re lucky
• A possible solution to the Vemurafenib resistance problem using an existing drug
• Nanotubes can be used to kill breast cancer stem cells, and maybe other tumours too
• On the other hand breast cancer stem cells may be created during radiation treatment
• Maybe we should all just have a nice cup of dandelion tea instead.

Finally, in the black humour section, here’s a good one:

Yes, well, that’s quite enough for now.  As always, may you all be happy, safe, healthy and at peace.

News Roundup

Sad to say it’s been a rather dismal week or two on the State of Being front.  In retrospect I think it all started back in late November when Dr. G floated the idea of chemotherapy.  As you may recall that idea caused me a certain amount of discomfort and the January meeting with Dr. D, in which she told us of her misgivings about the new drugs, did little to alleviate my fears.  What tipped me over the edge just recently was the discovery of several new lumps.  When I say “several” I mean “more than usual”.  There are currently eight suspects.

Probably not all 8 are brand new.  Two or three are in places where previous lumps have been removed and I have been assuming that lumpiness in these locations were scar tissue, but now I think they are growing.  There are two more very close together in the area of the most recent excision, an area that has seen quite a good crop over the last year.  Another two appear to be loners in places where no melanoma has ever set foot and another is so small that it may just be  a figment of my imagination.

The fear this has provoked can be summed as “Now WTF?”  I’ll find out on Wednesday whether they want to deal with all at once or whether they think more drastic action is finally required.  It is a good thing that we managed to get a good deal (thanks to Ms. M.F of California) on a whole pile of really high-tech dressings from eBay:  looks like I’ll be needing them.  Is this the start of a more active phase of the cancer?  Could be.  Isolated limb perfusion typically gives one 2-3 years of partial remission which I have now completed.  Dr. G was talking about re-perfusing my leg which may slow the progress again for a while but eventually I will almost certainly have to face the fact that this stuff is not going away.  As a result the last few days have been interesting, not entirely bad but definitely not comfortable.

The good news is that I cope with anxiety much better than I used to.  I have been taking some extra clonazepam but most of the time I can manage to dismiss the anxiety, work through it or just sit with it, in the sense that I can watch my mind working on it without being much affected.  Noticing the tension in parts of my body (notably my stomach) is also useful:  consciously relaxing often helps to get rid of the physical symptoms which then stop providing positive feedback to my mind.  At P‘s suggestion I am embarking on a fairly intensive period of meditation and study.  This will help in two ways.  Firstly it will take my mind off my immediate fears by giving it something more “wholesome” to ponder.  Secondly I will get a booster shot for whatever may come.  I am hoping to spend between four and eight hours a day at this stuff for the next little while, which should keep me out of trouble.  Ultimately I have to let go of my many attachments: possessions, opinions, appearance and ultimately body, to name just a few.  In the meantime I am working on a more complete acceptance of the anxiety and of the increasing rate of lump production.  Progress is occurring.

Of course, it is perfectly possible that once we’ve cleared out this batch of lumps things will more or less return to “normal” again, which would suit me fine.  Nevertheless this has given me a big dose of incentive to build up my endurance for whatever is to come.

As a part of my recent flurry of activity I sent emails asking for updates on a couple of the treatments that sounded particularly promising:

• Dr. Ohashi (mentioned in this CBC article) was kind enough to provide more details of her research and to offer:
  

  … something to keep in mind is if you ever have a tumor resected – no
  matter how small, please let us know, because we can freeze away the
  cancer fighting T cells for use at a later time.

  I may take her up on that.

• An inquiry to Australia on the subject of treatment with Rose Bengal  pointed me to a clinical trial of PV-10 which may be something to consider if I run out of skin to cut off.

From less personal sources we have:

• Macleans has an article on Dr. David Agus’ new book, The End of Illness.  According to him we should be paying a lot more attention to inflammation:  taking aspirin is a Good Thing.  Exercise is too.
• A group in South Korea is working on cancer detection using nothing more than a drop of blood and an iPhone.  Bleeding edge technology they say, but this is not a joke.
• Speaking of inflammation, Viagra finds a use fighting melanoma.  This is also not a joke.  But it could be an excuse….
• A Manchester University team is investigating why some people are more prone to depression and anxiety than others.  It seems to be a matter of “resilience”, something I obviously lack.

So ends another exciting episode in my head.  I hope you have enjoyed it and perhaps benefited from my observations.  If anyone out there has a cure for what ails me PLEASE drop me a line!

News Roundup

I’ve been a bit down in the dumps this last week or so, as usual for no apparent reason.  There was no specific trigger that I can identify although there were a few additional straws (new potential lumps) that may have contributed to the proverbial camel’s broken back.  None of this is exactly “news” to any of you who know me well or who follow this blog much but these days I try to use these bad times as an incentive to practice mindfulness and get to know myself better.   This posting is as much for my own benefit as it is for anyone else.   There is some consolation in the feeling of progress this gives me.

Early symptoms of the blues include:  increased irritability, decreased energy, a more crampy gut, a reluctance to go to bed, a reluctance to get up and a more gloomy outlook on life.  I hear some of you saying, “Yeah, that sounds like you all right” and if I ever figure out who said that you will be off my Christmas list!

If I start to feel jumpy, nervous or shaky that indicates further slippage.  My pulse rate will be a bit high, my breathing more rapid than usual and I will have trouble sleeping.  The next stage on the way down gives rise to the “You are summoned to the principal’s office” sensation:  weak knees, shakiness and a sinking “What’s going to happen to me?” feeling.  It requires strong mindfulness and concentration for me to focus on things or make decisions.  This is usually the stage at which I will be taking .25mg of clonazepam from time to time, especially before I go to bed.

If I let that go on for long enough I may sink into a state of total incoherent panic complete with clammy hands and rivulets of perspiration.  Definitely Not Fun.  This last stage is mercifully rare.  The last time it happened, a couple of years ago, I was sending out frantic emails to some of my close friends – and I thank you for your prompt, helpful and sympathetic responses.  It turned out that half a milligram of clonazepam was all it took to bring me back to earth but it was a frightening time.

The most helpful observation is that the blues can descend upon me and depart again for no apparent reason and that the associated feelings tend to come and go in waves.  Just knowing this makes it easier to cope:  I know that it won’t last forever.  Furthermore, these are only feelings:  there is no direct threat to my well being.

Another thing I have noticed in the early stages of the blues is the recurrent thought, “Will someone please fix this for me?”  It is a variation on “Mummy!  Kiss it better!” and is not at all helpful.  Having caught myself playing this game I may be able to avoid the trap in future.

So, there is progress.  Now that I know how little clonazepam it takes to settle me I am much more relaxed about using it.  That coupled with all the effort I have put into mind training means that these episodes are shorter and less serious than they used to be and that I function better even when I don’t feel so good.

When the weather clears in my head the world seems filled with possibilities and interest.

• Scientists have figured out why the BRAF inhibitors (vemurafenib etc.) promote other cancers.
• People at U of T have invented a gizmo that detects various infections and cancers from a blood sample or a tissue swab.
• New Scientist reports on another attempt to lure cancer to its doom by exploiting its sweet tooth.  There is also an article describing a whole different theory of cancer:  interesting.
• Here is another attempt at targeted drug delivery involving light-activated cytotoxic drugs.
• In China researchers have found a way to target cancer stem cells specifically.
• There may be marijuana-based pharmaceuticals on the shelves before too much longer.  Probably not as much fun as the traditional use but maybe more reliable in certain cases.

Finally,  I would like to say

thank you

once again to all of you who have contributed news tips, offered encouragement or commented on my turgid prose.  It’s good to know someone is reading this stuff, or at least cares that it is getting written.

News Roundup

The results of the CT scan are in:  no visible problems.  This is a relief because You Never Know and it is highly likely that one of these days there will be a visible problem.  However, for now I feel great and it looks as though I will be able to forgo death by melanoma for another year.

We saw Dr. D yesterday.  She is not altogether happy about the side effects of the new drugs (Yervoy aka ipilimumab and Vemurafenib aka PLX 4032) and would rather not inflict them on anyone if she doesn’t have to.  Her experience also suggests that only 3 out of 15 patients tested have the B-RAF mutation necessary to qualify for Vemurafenib, a rather smaller proportion (20%) than the 40% touted in earlier trials.  This is not a whole lot better than the standard treatment, Dacarbazine.  Having said all that she does know of people who have had good (and fairly long-lasting) results, at least from ipilimumab.  She has promised to share any news she gleans from a melanoma conference that she (and Dr. G) will be attending in March.  Anyway, for now we go on as we have: taking out the lumps as they appear.

Speaking of lumps, later in the day we saw Dr. M and just for a change of pace we could find nothing worth cutting off.  The previous wound seems to have healed OK now (after the antibiotics) so we’ve left the next appointment date open.  If nothing else happens I’ll go and see him in 3 months or so just for a checkup.

Now that’s all over for a while I can start planning a few months down the road.  P and I are both going to spend Feb. 4th at a “mindfulness day” where we will eat, sit, lie,  walk and occasionally run while being mindful.  It’s good practice – a sort of mini retreat.  Speaking of retreats, I am going to look into another 1 or possibly 2 week retreat in the spring.  The last one I did was two years ago and I can’t say I’m really looking forward to doing it again.  Spending that long in meditation (including mindful meals, chores, study etc.) is really a lot of work.  However, it is a highly-recommended way to make progress and given how much I have gained from all this mindfulness stuff it is probably best that I grit my teeth and Just Do It.  We are also expecting some friends to visit in late February so there’s lot to keep me amused.  I hope all of you, dear readers, are getting 2012 off to such a good start.

• Fibroblasts contribute to melanoma: something else to watch out for, I guess.
• A new photo-acoustic device helps in the early detection of melanoma.  Too late for me, sadly.
• Potential cancer fighting bacteria found in the Bay of Fundy.  Perhaps I should take more mud baths, then.
• How well are we doing in the fight against cancer?  CBC lists the top 10 cancer breakthroughs of last year but also offers  some sober reflection on this:
  

  Unfortunately, our success in reducing the mortality from cancer over the past 60 years has been very, very modest

  However, it also mentions that the Princess Margaret Hospital in Toronto is starting a trial using engineered T-Cells.  This might make it easier for me to get such treatment should I ever need it.

• A novel brain tumour vaccine targets proteins found on glioma stem cells.
• Macleans has a useful article on some of the myths surrounding Vitamin D.  It doesn’t specifically mention the purported cancer-fighting properties, however.

So it goes.  As always I hope you are all staying well and I will also do my best.  Cheers!

Happy New Year everyone!

Today saw two minor developments in the continuing saga.  First I got a CT scan, this time without the contrast dye that they usually IV into me.  The last time they did this they were concerned because I sneezed when I was about to leave and they made me sit around in my johnny shirt for an extra 20 minutes, presumably to see if I would catch pneumonia.  Apparently sneezing can be a sign of an allergic reaction to the dye and since this can get fairly fatal they take it pretty seriously.  When I mentioned this to Dr. D she said she would get my future CT scans done without the dye and so it has proved to be.  The whole exercise is very short, now that they don’t have to muck about with the IV.  My next appointment with Dr. D is on the 11th by which time I expect the results to be in.  There does not seem to be any reason to worry.

After this came breakfast and a little while later I was back at Dr. O‘s office getting December’s stitches taken out.  I think she’s starting to worry that if she takes out many more I will unravel completely.  However, this time she was more concerned about a small infection.  They can get quite serious quite quickly in that leg so now I have a week’s worth of antibiotics (which the pharmacist pithily described as smelling like cat’s p**s) to take.

Since there was quite a bit of slack time today I did a fair amount of walking (yes, I am getting a little more exercise these days) and meditating.  My New Year’s resolution, in addition to staying alive, is to work harder on the enlightenment stuff.  I’ll probably sign up for a retreat sometime this spring.

Just for the record, a visit to Dr. L back in December was comfortingly uneventful.  He still thinks I have “beautiful skin”!  I told him I’m not done with it yet.

News Roundup

I am sad to report that our sometimes commentatrix, Randi, died on December 29th, just about exactly one year after K’s mum.  In spite of all the advances this is still a very hard cancer to fight off once it gets a good hold on you.  So far I’ve been luckier than some of my co-sufferers, a fact for which I am very grateful on a daily basis.

• Did I mention that fish oil can interfere with chemotherapy?  The reason I’m wondering is that the article is dated September 2011 but it only showed up in my RSS feed on December 15th.  I’m going to have to look into that.
• Those engineered blood stem cells were also noted by Science Daily, and again it seems as though it’s taken a while to filter through to me.  This one showed up today.
• Apparently there is a genetic predisposition to acquire melanoma of the eye.
• Avastin may help prolong the life of those women unlucky enough to have advanced ovarian cancer.
• Another win for Mindfulness-Based Stress Reduction, this time with breast cancer survivors.

That’s all for today.  I’ll drop a post here when I’ve got the scan results.  As always, I wish you all good health, long lives and many of them.

Have a wonderful 2011 – 2012 transition, whatever form it may take!

The lump is gone:  good news for Christmas.  Since my last posting a number of things have happened.

I had the stitches removed from the previous two excisions.  It’s a pity one cannot recycle the sutures:  they’re quite expensive and I’ve gone through a lot this year.  A couple of days later Dr. M called to give me the results of the pathology report:  both lumps were melanoma and both had clear margins.  On the whole I treat this as good news these days.  A week or so after that Dr. D called to talk a bit about the proposed chemotherapy.  Her take to this is to reserve systemic chemo (as opposed to locally injected or limb perfusion) for a last resort.  In general, start with the most local procedure one can manage (usually surgical), escalate to the next most local (usually radiation and only then reach for the shotgun.  Apparently the newer drugs are still only available on a compassionate trial basis and I may still be denied them if I’ve had something else.  So, today I went back to Dr. M to show off my newly healed wounds and to ask him to give me another one.  This task he delegated to the usual suspects, a lovely collection of doctors and nurses with such a great sense of humour that I always end up in stitches.

On January 3rd I get my next CT scan the results of which should be known by the time I see Dr. D again on January 11th.   At that point we can revisit the various chemo options and my new year will off to another great start :-^

Meanwhile I continue to meditate and study mindfulness techniques.  A couple of weeks ago saw a small but significant breakthrough when I learned to distinguish between

1. the problem (having cancer)
2. the mental state associated with the problem (anxiety)
3. the worry that I won’t be able to cope with the mental state (panic)

It finally clicked after a day of feeling mildly anxious, a lot of reading and a long, learnéd discussion with P.  I have now been able to accept the anxiety.  What I mean by that is that I’m not just saying “I accept this” but I am also feeling that “It’s OK to be anxious”.  As a result I can still feel the butterflies in my stomach but it no longer bothers me much.  The first day I felt this way I was almost bouncing up and down on my chair with delight:  it was like “I feel cruddy but I don’t care!“.  It has been a wonderfully liberating experience.  Eventually I hope to be able to accept the cancer itself and then I’ll stop feeling anxious about it but I’m not holding my breath.  Lots more work to be done on my head before that happens, I suspect.

News Roundup

• Researchers think that males may be more prone to melanoma than females because they have lower anti-oxidant levels.
• There seems to be a P-Rex1 gene that has to be present (in mice) in order for melanoma to metastasize.
• UCLA have taken treated T-cell therapy to the next level by engineering blood stem cells to generate the required T-cells.
• A drug normally used to control seizures appears to slow the spread of uveal melanoma.
• There is a report giving an overview on advances in cancer treatment.
• Photodynamic Therapy (PDT) is an alternative approach to cancer treatment.  Anyone care to comment on how reproducible this might be?
• Note to self:  rapid heartbeat in the morning does not necessarily mean I’m having an attack of anxiety.

Finally, as a sort of Christmas present to the world, I’d like to draw your attention to:

Design of Image-guided, Photo-thermal Controlled Drug Releasing Multifunctional Nanosystem for the Treatment of Cancer Stem Cells

It sounds terribly dry and dusty, doesn’t it?  You really should follow the link.