Lung Damage Explained

Can you believe it I finally get to the surgeon and I can't find my lump!  the hard core has disappeared again and the soft squashy tissue isn't squashy.  I don't know whether its because my Doc is (in my opinion) one that gets your heart rate going or the healing did a damn good job.

The lump does move and after forcing a few coughs it came up and down from the ribs, Aha lung tissue being forced by underlying meso.  Can't do it and this is why:

To remove the meso would mean cutting away alot of healthy tissue to ensure it was clean, because of its situation part of my rib and muscle would need to come out too.  A lot of pain to follow and another year for the body to adapt.  Then, once in how far does the meso go, if the lung needs cutting then serious risks of it not repairing, its close to the air leak and fluid department which makes even more complications.  Hence, unless the lump explodes and goes red and sore and weeps it stays where it is.

At least explained in nice normal understandable terms.  I do feel helpless and left to ransom with this cancer though.  We talked about the other tumours, not so much the tumours but procedures to remove them.  Cryo although good at freezing, not proven as a procedure here, like thermal can explode and kill the tumour, but what about the outlying damage around the tumour it causes.  Everytime I stick something into the lung it leaves scarring, increases the risk of collapse completely or another lung disease.  Radiotherapy needs a decent sized target to ensure it doesn't damage other tissue.  The waste of the cells gets washed away in your blood, the hope, although not proven, is that it triggers something in the immune that suddenly sees what a cancer cell is and stops helping them for a while.

I apologise if my doc reads this and I haven't understood it correctly!

The progression at the mo is slow, does that make me feel any better, no as I was looking for something the other morning and I found a report from the radiologist in 07 which said something along the lines of although progression was stable and slow in 06 within the last 3 months the disease has become aggressive. 

I know my name has been put forward for any trials that may pop up, but hubby isn't keen on this idea.  The meeting was also interesting because I do expect to much from my body.  When you have an operation you expect to feel better the next day because you have got rid of the symptoms, although after the problems I have had with surgery over the years I should know better.  But cutting into the chest region takes an awful long time to recover (not the few months I pushed myself into), meso causes a lot of pain naturally - for some reason it always finds nerves to sit on and muscles to grow from.  The lung is simply covered in nerves and anything that doesn't belong keeps sending alarm bells to the brain which in turn makes it pain.  Then there's the additional fighting going on within the body, making us tried, other organs don't get as much protection because our immune system is busy working in our chest, it goes on and on. 

Each person I know is looking for something that can help them, and the rest of us.  Again with meso what works with one seems to have no effect on another, hence the trials never get the results because overall it isn't a benefit to the masses. 

All I can do now is hope that the meso doesn't grow (likely chance of that happening) or when it gets to 2cm I get them blown apart and my body picks up being a garbage man and clears the rest away. 

Oh and believe it or not but the scan arrived about 3pm on Friday, just as we got home!

No walking for me and the dogs today either, the wind out there is terrible so guess its a day in the house and the dogs in a sulk with their mother!  Enjoy your day

No Hard Scan Copy

Today I am off to see the surgeon about my lump, but as usual have been let down my the system as my copy of the scan has not arrived.  Strange really as our local hospital does all the scans for James Cook yet they can't access the system to see them on screen.  How am I going to try and convince my doc, even though the odds are already against me from the oncologist, that removing this damn thing is better for me than leaving it!

After all this time my operation has settled, could you imagine the way I would be feeling right now if the meso hadn't come back, I would be normal, yeah better than normal, because I would be appreciating what feeling good was about.  Instead, I have new pain and twinges!

I am happy to report that Lexi flew through her operation yesterday and although tender when she walks, she is fine.  She did sleep most of yesterday on the sofa and didn't want to eat or drink but this morning she was up with the larks and wagging her tail.  Lorraine nearly lost her German shepherd on Monday evening due to a womb abscess, thankfully the vets did an emergency operation and saved her life.  This week has been spent worrying over both dogs.  I don't now how but pets always seem to bounce back that much better than we do.

When we dropped Lexi off at the Vets and came home without her Bear was utterly lost, he searched outside looking for her and then sniffed both hubby and I from top to bottom looking for clues of where she might be.  When Lexi returned home instead of Bear doing his bouncing and getting in her face he gently went up to her and gave her one of his sniff kisses, it was lovely to see.  I did take the opportunity of Lexi being knocked out to get her nails clipped right back and her teeth cleaned.  Terrible aren't I putting her through that as well! I had asked them to push her pile back in but when they checked her bum it was decided to leave it be as the furonculouces isn't doing that well.

I'm wishing myself good luck today, on the other hand it will be nice to catch up with Dr Owens for a chat as he has been a life line of advice over the last few years, and not forgetting he near enough carried out a pluerectomy decortication in 04.

Mesothelioma and sugar craving

Today I met a new oncologist and he is quite refreshing, he says he will be my advocater and help guide me to stay alive.  Unfortunately for both parties that is not exactly an easy job.  All doc's can do is quote proven treatments and for me that is Alimta, which I just can't do.  We discussed radiotherapy, cyberknife and ablation.  I can understand that statistics can't be proven to show that any of the three can help towards long levity and really can only be done for palliative care, and under the NHS it really has to be proven for palliative care before you can have the treatments. 

The quandary of a meso sufferer is how do we prove that such a treatment unproven can become proven if they aren't carried out?  You all know that I believe debulking is helping towards keeping the cancer back by having the larger tumours removed by ablation or direct radiotherapy.  If the dead cells travel through our blood our immune system can help pick up the code and prevent a little bit of growth for a while, but this isn't totally proven, therefore it isn't used as prevention.

I have been getting tired of late and eating fruit gums and midget gems as if there is no tomorrow, even planets and choc biscuits have been added to my list.  Today I read an article given from Lisa which says that cancer thrives on glucose 10 times more than the rest of our cells, could this be what is causing my addiction to sweet things?  As for the tiredness that is part of the meso affecting my cells, infact much of what he says I could match outright over the last few years.  Weight loss, sweats, cold, tiredness, loss of appetite, food tasting different, to name but a few. 

We had a look at the scan on screen and I have some abnormalities in the nodes under my arm, I knew really because my chinaman has returned, although at present he isn't using his blunt axe.  The three in my right lung are so small but there is a nice large one waiting for the picking in my left.  He also pointed out the nodule that is my 3rd Boob and it does look like its attached to the muscle.  I doubt Dr Owens will be wanting to remove it when I see him.  I could do with some treatment to it though because it does cause a lot of grief, especially the erupting volcano pains it gives.

On a high note he is quite willing to put me forward for Phase I and Phase II trials and is writing to our local cancer research unit to see if there is anything on going, together with that he will read the ADAMS trial and if he thinks I am suitable will put me forward. 

I said the usual, I am not ready to give in and I asked the question we don't want to hear the answer to, how long.  It is hard to say how long because the average is 12 months but then none of us have been average have we?  He would hope I would still be here this time next year - but there again we all know how fast the growth pattern of this cancer can change.

I wish we could take a razor blade again and just go around my lung and peel off the new growth, it will never happen nor could it. I also learnt something new today, he showed me the patch of air and fluid that remains in my lung area so when I get the scan copy I will put a pic of it up!

Yesterday we found a lump on lexi just under her last nipple so neither of us slept well last night with worry. Thursday can't come soon enough for her operation, I wouldn't care but we check her bum twice daily so I don't know how I missed it!  Poor Lexi, she has been biting her fur again too, this time on her thighs - she is back in the wars!

On that cheery note I think I will sign off.

Let's start proving that we do live past 12 months and get those stats lifted!

Jan

The week

Thanks to those who have voted for Jeff, I am sure he will appreciate it when I let him know.

I have been in communication with a lovely lady in the States this week who's husband was diagnosed just 2 months ago.  They don't want to do the standard chemo route and are looking at alternative ways.  She very kindly gave me the address of a trial he is currently on which is still open for enrolment.  I know it is in the USA but this is the title

Pilot Study of Bisphosphonate Therapy (Zoledronic Acid) in Patients With Malignant Mesothelioma (UAB 0901)

and here is the link  http://clinicaltrials.gov/ct2/show/NCT01204203

I actually contacted the co-coordinator and have been invited to enter if I clear all the tests. If it wasn't for flying I would certainly give it a go.  I did surf the net and tried to see if someone in the UK was running it but no luck so far.

There seems to be a lot more trials now in the USA than ever before and I wonder if this is something to do with the Twin Towers?

I myself am not so great, I don't know whether its the cold weather, the flu jab, both or the meso or maybe not the meso but because I got the scan imagining its the meso.  My back feels like the little pea is sticking further in and my chest itself feels heavier.  I have noticed I seem to have a little more pain when I have done the stairs and need to take a moment before jumping in the shower after the climb on a morning.

I am hoping to see Dr Owens through the NHS shortly to see about the last scan and My 3rd Boob.  I don't know what he will make of it and depending on the time of the day and what I have been upto whether the thing will be big or small on the outside of the ribs.  I don't think he will remove it but there is no harm in trying.

Having caught up on other meso blogs as I was saddened to hear that Anita had died, it seems at the moment that quite a few of us 'old timers' are having a hard time of it at the moment, and I say 'old' being the length of time we have had this cancer active within our bodies.

I think that shortly I will have to make a decision on what I am going to do, I hope that maybe I can get on the ADAMS trial in London if they accept me or if nothing else is available, but it does worry me having the placebo because that could have been time wasted not having treatment to hold back the cancer.  It is such a crux in the mind.  I am totally back to living in the 3 month cycle, if it grows more than 5mm next time then thats over 3 cm in places and I don't have 3cm worth of lung.  You know how your mind works!

Last week I deleted a whole load of code from one of my databases by accident - nearly 2 weeks of writing gone (which was done 4 years ago) - but for some strange reason yesterday I remembered my network home directory is now backed up and this was stored on it!  See stupid mistakes and forgetfulness will not do - hubby is telling me that I am run down and need a rest, and I keep responding that its not even cold yet so how will I survive when winter sets in, will my one brain cell completely freeze up.  Stranger still is the worry over the last couple of days that my bones are aching because of the meso not because I could be coming down with a cold.  See my imagination is running wild!  My blood pressure is on the low side too so that's why I am having dizziness when I bend down .. I am totally dropping to pieces.

Had better attempt those stairs and get in the shower, time will wait for no man and I have a busy schedule today, lets hope the brain cell can deal with it!

A Big Favour from Face Book Users

You know we have some great friends in Dubai and Jeff is a great photographer friend of ours, I'm sure that's how Gary started into his hobby.  Anyway in Dubai Sony have released a competition and Jeff has been invited to participate. 

This is his request on his blog page:

"once more, please help me win by giving me a pixel. to vote, you need to have a facebook account and this can only be accessed through a desktop/laptop computers. next is just follow these few simple steps:

1. access the SONY DI CHALLENGE app on facebook
2. if you’re visiting the app for the first time, click “LIKE” to allow access.
3. next is click through “VOTE FOR YOUR FAVORITE”, then “CHALLENGE 2″ tab on the right
4. finally, under the “PROFFESIONALS” section, just “GIVE A PIXEL” in order for your vote to be counted
5. if you haven’t voted for the first challenge, now would be a great time to vote my other entry."

To see his work, if photography interests you then visit his own blog site  http://www.dubaichronicles.com/

As you all know I don't have a face book account, neither does my hubby so I am begging, neigh pleading with you all to have a look and if you like his work, as he asks, give him a pixel.

Thanking you all in advance of viewing these photo's.

MARS Trial

By all accounts the MARS trial showed that surgery wasn't a winner.  I'm not surprised really, in all trials due to the way the patient is selected, not many become a success.  Why can't trials be done or handled in a different way.  I was reading the outcome in Mesothelioma UK, many might not have recovered enough from chemo to want to undergo surgery, infact it said that a third of the group selected for surgery didn't go ahead.  So that surely affects the figures.

What we need is a full database where patients (if they wish to) and specialists fill out info for all to see, this would be a much better gauge as to how long and what difficulties patients had. The usual trial way doesn't work and I don't believe ever really will. We still need new releases but give options to the parties not random selection.  If someone has no chance of remission and offers them self as a placebo they can't but could end up taking the drug and someone that has every chance could end up on the list that doesn't receive. 

If surgery is withdrawn what happens to patients like me that had no where else to go, yes my pain went up but I am still here to moan about it and lets face it we have to have something in life to moan about!  I know several who have had surgery and had no pain and are still here too.

Why put someone through a gruelling chemo before surgery?  if you are going to chop it out do that first, then maybe just follow up with tomotherapy.  Keeping the chemo on the back burners.  I don't know whether this would work better or not, but this is the stuff that doesn't happen in trials but in life in general.  If it was recorded country or worldwide.  We need something that states the growth of the tumours at the time of treatments, how many people have had almita and survived a good 2 years before remission was over, many have had surgery and lived a cancer free life for more than 2 years, how many choose not to have anything etc.  If a database was set up correctly it could be queried in such a way that you could find out the remission periods over counts much easier.  I know I am rambling but trials annoy the every essence of my soul. 

As for my own situation I am no wiser reading the report, there again it isn't written for joe bloggs is it, its to be deciphered by the specialists as that's why they went to college for.  The gist is that it is growing.  One thing I did notice is some are growing faster than others.  I am currently investigating the worth of getting 'My 3rd Boob' cut out. Hopefully, a referral will go this week to one of the best surgeons I know.  I am hoping that it can be removed without too much trouble.  Less cancer = longer life is my belief.  As for the right lung, once I receive a copy of this scan and it doesn't take 3 months to arrive I will send it off to London and see what they make of it. 

The problem with protocol is it stops people trying new things, there are rules and regulations.  It amazes me how we have managed to progress through medicine when so many boxes have to be crossed.  Why can't seeding be removed as the norm if the person is healthy enough for it.  The lumps get bigger, and I believe its because new cells grow but old cells don't die.  Therefore, its only tissue at the end of the day not some organ that we need to live with.  Whether this is the case with meso I am unsure, but again it must do something strange with our old cells.

I heard from Cher yesterday and was sorry to hear that she had such a terrible time after her first dose of chemo.  To spend the entire 21 days in pain and being unable to eat or drink is no fun and I am sure all our thoughts will be with her over the next 4 months. 

I have also been asked if there is a Meso Warrior group in Spain,  if you know of anyone out there can you please let me know so I can pass on the information.

Enough for now, work is calling not that I fancy going out into such a dark and dank day.

Bonfire - instead of guy fawkes it would be nice to burn the mesothelomia

Although I had my scan on Tuesday in the back of my mind I knew the results would be in by Friday, so I ignored the fact.  I knew when the phone rang about 6.15 on Friday it was my GP.   The scan is in, things aren't great, apply for a copy straight away.  He will print out a copy of the Radiologist's report and leave it for me to collect.  Would we like to talk about it, is there anything I can do?  You all know how the conversations go, although most have a team in place to help them through these times, once again its just hubby, GP's and me.

I wasn't shocked to hear that the radiotherapy has done nothing to stop the mass that is growing outwardly, indeed I joked the other day about having to buy a bra filler for the right to even me up.  I wonder if the mass is more like those solid fibrous type than the baked beans type I had removed along with the rest of my chest.  Strange though, because I feel really good and I do mean good.  My pain down my left side seems to have settled into mild discomfort, my tin box inside my left side is only annoying when I get up, the only thing that has been painful or maybe more annoying is my new mass, I may need to think of a name for this one - following in Debbie's shoes here - but to me its not really my meso as my meso is inside my chest not outside!  I suppose 'My 3rd Boob' would be appropriate considering where it is residing.  As for the rest it sounds like the invasion in my right side is continuing and the left is growing, I don't know whether its in numbers or just size.  Some thickening continuing around the pericardium (false one in my case).  He did tell me that some are showing slow progress, well that's a relief!

Even harder for me to understand is how the radiologist knows that 'My 3rd Boob' hasn't responded considering I didn't have a scan before radiotherapy and he had done my last scan in July - only a few weeks before this appeared.  Had it shown up on the Scan and he didn't report on it? Has my 4cm square become 5.  I know its heavy as my boob has a new substance about it and I do wish it was me putting on weight. 

Typical, I finally come through the pain of the surgery and get lumbered with something else.  This meso is becoming more strategic than I anticipated.   

Even with such news we had a wonderful weekend again and nothing was going to spoil it.

I had forgotten it was bonfire night and hubby decided we would have our own big family party, Bear, Lexi and us.  He prepared our bonfire in our burning bin, planted fireworks in various spots around the garden, we made curried parsnip soup, followed by hot dogs and BBQ spare ribs.  Bear wasn't bothered about the few bangs from the fire works but spent most of the time  running round the kitchen at times looking for the lights that had shot up from the ground.  The noise doesn't affect either of the dogs, which I must say I am so pleased about.  It was also the first time it didn't rain on bonfire night for many a year.

Today we went to Seal Sands and watched the local inhabitants battle it out for the love of a woman

These two males were fighting for the affections of the female in the background.  She preferred the one at the front and kept nudging his wounds every time the other one hurt him.  I think we spent about 30 minutes watching and snapping photos.  Hubby has become a really keen photographer and is trying to teach me .. Good luck with that.

To you all, keep living life - no matter how hard it gets remember something to make you smile.

Trick or Treat

Living out of a town in a small hamlet we miss out on the trick or treat which took over from "penny for Halloween" in my youth.  Every year we have always made our pumpkins and for once herewith is our effort to ward off the dark spirits that roam on the 31st of October.

Spooky

After the hard work of carving out the features on the pumpkins some of us needed a little nap and how could I not go and be cuddled by such a wonderful Bear.  

I hope everyone had an enjoyable time and the families that went trick or treating collected plenty of sweets.

Just five more minutes

Back in the real world  today was my scan and seems its a week of appointments as tomorrow its the flu jab and the dentist.  I suppose its better getting them all over and done with at once.  I would like to get my teeth veneered, considering at times I think I don't have that much longer left it is a waste of money but then why shouldn't we look our best, if you look ok sometimes it makes you feel alot better.  Would be different to go through pain for vanity rather than for cancer.

Time to go and dig out my chores for this evening, I need to do some work on the new housing site at Howden.  When we went to site yesterday I think the ensuite in the spare bedroom is too big taking space from the bedroom so I need to see if I can adjust it somehow.  One thing for sure is that each of the houses at Howden will certainly be different inside. 

Looking on the bright side in 4 months we will be looking forward to the arrival of spring, I know I shouldn't wish time away because it is here before we know it, but already the dark nights are soul destroying.