Monthly Archives: October 2011

Autumn definitely here

Autumn winds have arrived in a big way today, with a definite chill as well. Woolly tights and sweaters here I come. This is actually my favourite season, I love those crisp days, where you get sunshine with really clear air and red/gold trees. Not too many of those days left though as a lot of the leaves were blown off the trees today and they are starting to look quite bare.

We now have 6 weeks to the next scan , info on the Adams trial is being sent to us, we have to sign various forms before they can test the tissue samples held at Guy’s to see if he eligible.

The good news is as it coming back relatively slowly, we do have a longer horizon than we thought, so we are now planning what we do next.

All the meso blogs refer to this planning everything in short timeframes, we have adjusted to this now, it even seems really strange to me when people talk about plans for Xmas and New Year,or holiday ideas for next year. My friends are getting used to the fact we never commit to anything more than a couple of weeks away, cancellations can work out very expensive.

So over the next few weeks we are planning a couple of trips to the theatre, a couple of visits to see some comedians and possibly another weekend away before the end of November.

You can still have a lot of fun even if yo do have short term horizons- even have some tickets for the womens beach volleyball next year, so he is insists he be hanging around for a while yet.

One year on

It is almost one year to the day we first visited Barts and met D Steele, Ray had already had a pleurodesis at Oxford , so we had a pretty good idea what we were dealing with , but it was Dr Steele who gave us the formal diagnosis of mesothelioma.

I remember how hard I prayed on that first visit it would be the epitheliod type, that there would be some hope. The previous doctors effectively told us not to expect to see Xmas.

So today is a day to give thanks, because one year later , still here , still fighting, still enjoying life.

We chatted through the PET scan in more detail, it was good to see the top part of the lung shows a definite improvement. At the base , whilst the area of uptake is less, the density is greater. Overall, it should be stable but there is no doubt about the increased levels of pain and the return of the cough. This is enough to suggest something isn’t going to plan, so in 6 weeks we come back for more scans and in the interim we will get all the info on the ADAMS trial. The good news is that because tissue samples were taken at the time of the pleurectomy , we don’t need to do anything they just need to test what has already been taken.

To celebrate our anniversary, we stopped off at 1 New Change for  a small glass of champagne and then went on to eat at Barbecoa. Great meal and a fabulous view .


We thought how much we had we had to be thankful for, firstly getting a great team on our side of surgeon, oncologist and nurses. Shown again today , when our scan hadn’t been received by Barts ,the oncology nurse made a special trip to collect it from St Thomas’s and make sure it was uploaded for our appointment.

Thanks for getting through the surgery, for surviving the hell of chemo, for the strength and support of our friends and family, for finding new friends through Macmillan and for my old and new employers in supporting us financially to be able to enjoy our time together.

One year ago, we thought he had three months left, so thank you for every day since, here’s too many more

One last request, appreciate a long way down the priority list but would be quite good if Wales could beat France tomorrow !

and on we go

The good news from today is looks like he will still need to buy me a Christmas present. Results in from the scan, the good news is our friend meso hasn’t spread anywhere, it hasn’t gone to the lymph nodes , chest wall or diaphragm. It does appear it has returned at the base of the lung but still at a cellular level, so limited progression.

The next stage is too look at the current trials that are about,  as now might be a good time . The  ADAMS trial was mentioned but there are also two new trials due to start,one is through an American company setting up a trial in Harley St. Although it is at a private hospital, the trial itself is free. A further phase 1 trial is being run at Guy’s and the Royal Marsden. This one isn’t specific to meso but has had good results with these types of tumours. Our surgeon has spoken to both of the oncologists running these trials and they are happy to look at us further.

So our next step is another appointment with Jeremy Steele on Friday to go through the scan results in more detail and consider the different trials.

Overall, could have been a lot worse, we go on to fight another another day.

Fun in Lyme Regis

A good weekend, where despite all the stresses and strains we managed to enjoy the time together. We had rented a quaint cottage, that used to be part of an old cider inn, our cottage was the old snug.

We were even lucky with the weather, having thought the weather had changed for the worse we were prepared for rain and winds. In fact it stayed really sunny and warm, so we spent Friday exploring Lyme, including the Cobb, where I could do my Meryl Streep impression from French Lieutenants Woman.

Then on Saturday went for a walk we found in one of the guide books, which involved a steep climb up Horsemans Hill. The guidebook had warned us about this, what it hadn’t really covered in detail was the walk down through the undercliffe, referred to as a walk down steps through the woods !!

These steps were made up of tree roots and were nearly perpendicular in places, it had cracked skull written all over them, ending up spending a lot of time on my bottom, whilst lowering myself down

Sunday , we walked along the beach looking for fossils, in beautiful sunshine, walking back the tide had come in, so had to have a bit of a scramble to avoid getting our feet wet. Well , not too wet anyway.

Back home and great news from our Spanish meso warrier, his follow up scan shows the tumour to be stable, at last some good news for someone. We’ll know how far it has progressed on Wednesday, so fingers crossed it isn’t as aggressive as they think.

making the most of the weekend

New PET scan has been completed, appointment made for next Wednesday to get the results, so no more we can do for now, it is in the lap of the gods. We know it’s back, we don’t k ow how much, our minds go constantly through all possible options, from teeny ,weeny change ,to extensive growth into chest wall and diaphragm, the two areas the surgeon thought most likely to be affected.

You are trying to prepare yourself for very possible option, so that when it is actually confirmed, your brain doesn’t seize up completely and you can still listen to what is being said, if it hasn’t got too extensive , there seem to be three main options.

Do nothing
Go for the second line chemo
See if he qualifies for the ADAMS trial.

Unfortunately the magic wand option doesn’t seem to be on the list.

This weekend as planned some time ago, when the outlook appeared rosier, we are off to Lyme Regis, so are determined to make the most of what could be our last holiday together . No doubt there will be a few beers , lots of walks but definitely no chat about meso. This weekend is for us, she isn’t invited.

Disappointing news for Vorinostat

Recent reports suggest  results of an extensive trial prove the drug Vorinostat (Zolinza) fails  to extend the survival of patients with malignant mesothelioma.

Previously it had been  hoped Vorinostat would have been a positive step towards fighting this cancer, but , in Phase III trials, the drug didn’t meet its primary endpoint, which was to extend the life of those suffering with mesothelioma.

“Unfortunately, there was no benefit with regard to overall survival compared with placebo,” Krug explained. “There was a statistically significant improvement in progression-free survival, but it wasn’t clinically significant.

This  study included patients who had failed to respond to first-line therapy with Alimta (pemetrexed) combined with cisplatin or carboplatin. These individuals were given Vorinostat twice daily for three days each week during a 21-day cycle. More than 600 people at 92 different sites participated in the study.

Unfortunately, the Phase III trial showed no significant benefit for those who took the drug versus those who were given a placebo. The median survival rate for patients who took the drug was 30.7 weeks compared to 27.1 for those in the placebo group

Another PET scan

Well the new scan is booked for tomorrow , so another fun packed three hour hospital visit . The PET scan takes a lot longer than the CT, as once they have injected the radioactive glucose, which takes around 30 mins, you then have to rest for around 90 mins for it to be taken up around the body , then have the scan itself.

We have a follow up appointment booked with the surgeon to discuss the results the following Wednesday and the oncologist on Friday 14th, so by the end of next week we will know the extent of the bad news.

We know the little darling is back, now we need to know just how quickly it is growing . The last scan was done on the 27th July and showed no conclusive evidence of any meso, so this one will show us the spikes in glucose uptake where it has developed.

From the areas of pain,it appears most likely to be in the chest wall and diaphragm. Today as well as pain in his back, his chest wall was also tight on the right hand side. At the moment neurofen in the morning and evening is just about controlling it , we have also been prescribed some much harder hitting painkillers.( dihydrocodeine)

What’s really scary is four weeks ago, we were having a great weekend in Goodwood, no pain at all. Then an ache around 2 weeks ago, now we are talking about serious painkillers just to get through the day. I really don’t want to think about just how quickly this is growing or how to deal with the pain.

As so few of his family know about the situation, it is coming very close to having to sit down and tell everyone , including his teenage son, just what is going on and how much time is possibly left.