Not doing at all well today, still no sign of any real improvement in the pneumonia, will be mid way through the course by tomorrow, so had expected a bit more effect by now. On the other hand it hasn’t got any worse, although still has the crackly space dust effect – which is really disconcerting, listening to someone’s lungs crackle
He slept really badly last night, not through coughing, just generally , took ages to get to sleep , then awake at 3.30am, then took a couple of hours to get back to sleep , then very fitful through to around 8.00 am.
I think it is really starting to wear him down, I know he is now thinking maybe it isn’t an infection, maybe it is the meso. Or maybe it is an infection that just won’t respond to treatment and I’ll go downhill really quickly anyway, or maybe its viral and it will just slowly waste me away…. Can tell this is now getting frightening, so no wonder he finds it difficult to sleep.
If no improvement by the weekend, will go and see the GP, although not too sure what they can do other than change the antibiotic. At the moment he isn’t that breathless, talking really brings on a coughing fit though.
Not feeling as though I am much use at the moment other than offering nightly prayers that the infection starts to show some signs of improvement, even something very small would be a help – a really good result would be if the crackles were to stop !! because that is scary.
Not a great day yesterday as the pneumonia didn’t seem to be responding to treatment, the coughing was truly dreadful and we did start to worry he would need to go into hospital. He was also getting very worked up that this was it and it would now be all downhill. The fluid on the lung form the infection, did give a really strange side effect, when breathing out , it sounded as though his mouth was full of popping and cracking- rather like taking space dust.
Would have been really scary, but at least we know what was causing it, apparently crackles is a well known symptom of severe pneumonia. After a worrying day, today has been a little better- the crackling is less noticeable and he feels less breathless, so we are hoping the antibiotics have started to kick in and will be further improvement over the next few days. It doesn’t take much to make us feel more hopeful ( work on very low thresholds these days) so here’s looking to a better end to the week.
Three days into the antibiotics and slight change in that the cough appears to be improving. Although he is still wafting around the house like a Victorian maiden with consumption, pointing out how he needs lots of rest and cups of tea ! As well as pointing out that George Michael is in hospital with his pneumonia – and he hasn’t had lung surgery!
Did drag him out for a short walk along the high street yesterday to take advantage of the sunshine, though it was very windy. Bit limited on going anywhere, with bouts of hacking coughs. This also makes him very sore around his lungs and diaphragm, so although the painkillers are working in general, this is leaving him a bit washed out as his sleeping isn’t too great.
Sporty day yesterday , watching not playing, with the grand-prix and then the tennis. For dinner I made chicken in a mushroom sauce, with mash and savoy cabbage and carrots with butter and nutmeg. My cooking has definitely come a long way over the year , although the kitchen still looks like a bomb has hit it afterwards.
Loads to do in the house as it is looking a bit messy ( even by my standards) plus a busy three days due at work, then before you know it we are planning when to put up the Xmas tree, bought the christmas cards yesterday, so it is beginning to feel a little bit christmassy.
Devastating news about the young Wales manager Gary Speed, it seems crazy to read about this when so many meso warriers are trying so hard to stay alive, his family must be distraught.
We did the usual walk from the tube station to Bart’s with a heavy tread, rather sadly our favourite garden was all cordoned off , all the open spaces near St Paul’s have been cordoned off because of the protestors. A bit of me did think , whatever you may think of political persuasions, if they had turned that lovely garden which has given us so much pleasure and comfort was turned into a campsite, I would have gone round and ripped up all the tents myself.
We got in and amazingly , only waited 20 mins, to be greeted with the words, the new scan shows definite progression. ….
Scan called up on the screen, which we all peered round, it looked very scary, lots of new sites, loads in the lung etc. Then Ray started coughing violently,which has been going on the last week. At which point we got lots of questions from the doctor, to cut a long story short, it appears that he now has pneumonia! Which totally interferes with the PET scan as any bacterial activity will also show up as a hot spot- only in meso world could pneumonia sound positive!
So totally inconclusive results, two week course of anti-biotics and new scan in January.
Researchers from Johns Hopkins’ Kimmel Cancer Center recently announced a new two-drug chemotherapy regimen produced promising results during a study of 45 patients who faced certain death from advanced metastatic non-small cell lung cancer, results of the study gave doctors hope for new and better treatments for this particular type of cancer and perhaps other thoracic cancers like mesothelioma
Researchers used a combination of the drugs azacitidine and entinostat, previously used to treat leukemia patients. Average survival rate after one treatment was 6.4 months as compared to 4 months for those who received the standard treatment for non-small cell lung cancer.
Survival rate among study participants who received two treatments rose to eight months. However, there were several patients that showed dramatic results after two treatments. This includes seven participants who are still alive. For one, it has been four years since participation in the trial. Furthermore, study patients who went on to receive conventional chemotherapy after participation in the trial seemed to fair better as well.
This new approach, researchers explain, is known as epigenetic therapy. “Epigenetics explains molecular characteristics apart from DNA sequence that influence how genes are expressed,” explains the article. “While gene mutations are known to cause cancer, epigenetic changes that turn genes on or off also affect disease development.”
PET scan completed yesterday at Barts, as part of our consumer research, thought we would compare to St Thomas’s , the previous location for scans. The good news is just as efficient and really nice people. Slightly different in that slightly bigger, so the resting area was more ward like, also rather than an individual on hand to administer the radioactive bit, there was a machine called R2D2 which was set up to administer everything on a timed basis.
During the scan itself , you have to keep totally still, Ray says he just keeps his eyes shut and tries to relax. This time however, even with his eyes shut , he was aware of a a light show going on above him, with lights zoning through different colours, in a strangely relaxing way.
So looks as though Barts wins in the chill out zone category – although Tommy’s goes ahead on the personal contact. Results and report due at our Friday afternoon appointment, so fingers crossed and let’s hope for no further progression and a chance to enjoy Christmas.
Interesting report from Italy, it mentions the use of EPP, which is now considered less attractive as an option in the the UK, due to the high degree of complications. However the Italian study is still interesting for its combination with radiotherapy – of course if you can undergo EPP, you’ve got to be pretty strong to start with, so not sure if these patients wouldn’t have survival in the upper range anyway.
A team of Italian researchers recently analyzed the records of 56 mesothelioma patients who had been treated with adjuvant radiotherapy after extrapleural pneumonectomy surgery (EPP) between 2005 and 2010. Extrapleural pneumonectomy is a radical surgical procedure that involves removing not only the mesothelioma tumors, but also the lung closest to the tumor and a portion of the diaphragm.
Although EPP is controversial due to its high rate of complications, a number of studies have shown it to increase survival, especially in carefully-chosen, otherwise healthy patients with the epithelioid type of mesothelioma.
Four of the EPP-treated mesothelioma patients in the retrospective Italian study were treated with Intensity Modulated Radiotherapy (IMRT,) and two with helical tomotherapy. The patients were all treated with 45 to 50Gy to the affected areas inside the chest. Twenty of the patients also got a simultaneous “boost” of 60Gy to the margins around the tumor in an effort to destroy any remaining mesothelioma cells.
For 90 percent of patients, the mesothelioma was kept under control in the region of the surgery for three years. Sixty-six percent of patients did not experience spread (metastasis) of their mesothelioma during that time. Fifty seven percent of patients were considered disease-free for at least three years.
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The good news is there is a definite improvement, as the cold symptoms start to retreat . the aching muscles, the snotty nose and the exhaustion, as well as the slight temperature, up to 37.5 have all started to disappear. along with the nose bleeds- so sometimes there are other bugs out to get you not just the meso. His cough is still present , but it sounds different to the usual one
We even managed to get to the theatre yesterday, to see “An Inspector Calls” , its a great production so glad we got to see it. We have also just discovered our box set of the West Wing, so are working through series one- never watched this originally until series three, so allnew to me as well
So still here. having a better day , hopefully the rest of the week will go well.
I hope that this isn’t a harbinger of the rest of the year. After the flu jab reaction and nosebleeds, he now has a really bad cold , with blocked nose, sore throat and general run down feeling.
Must admit seem to have been a few people around with it , feeling a bit under the weather myself, but of course whenever he gets anything like this his general health deteriorate so much more. This means he has also lost weight, he actually lost about 2 kilos the weekend of the flu jab – straight across to me unfortunately. He managed to regain a kilo during the week but has now lost this again.
This of course makes you wonder is something worse is going on, then again if ate the same as him this week I would have lost weight as well. For lunch while I was at work , he had an apple!! I feel such a nag and so insulting when I keep asking what he has had to eat, understand how parents of anorexics must feel, it is as though you are on constant alert.
He mentioned today how fed up he was of feeling ill , these last two weeks have got us down. We could really do with a stable scan result to give us both a boost, not doing too well at the moment with the P part of PETAL, in fact not doing well with the E or T bits either.
Scan is now on Tuesday , with the appointment for the results on Friday , so well into the anxious countdown week .
Hopefully a better night sleep will improve matters, have given up wishing for him to have a good nights sleep, as these simply don’t happen anymore, so we will take what we can get.
Sad news this week at the death of an Australian meso warrier, Anita was diagnosed around 2007 in her forties, not only did she survive the initial diagnosis , she also had the miracle of a baby girl, despite chemo. Her memory now lives on in that baby girl.
It has been a difficult few months, having to say goodbye too so many warriers, Ray’s scan is due in two weeks and it is difficult to stay positive and keep some hope for the future. Research is ongoing but it seems so slow.
This week although the pain has been under control, seems to have been the week of nose bleeds. This happened during the second phase of chemotherapy but nothing since. This week , seems to be every day , over dinner , at breakfast or walking down the road, usually at a time of maximum hassle. No idea what has brought this on, possibly the ibrufen has built up , but other than that no idea.
Although this may sound minor it is really depressing, it is yet another reminder that you aren’t normal, yet another reminder of being ill. So emotionally I know that it brings him really down.
Any ideas gratefully received as to how to stop them occurring!