Myeloma UK :: ImMucin - a potential vaccine for myeloma?

Myeloma UK :: ImMucin - a potential vaccine for myeloma?

The problem with people with Cancer is that they die!

I found out yesterday that one of my friends that I kept in touch with via email has died.

I’d not heard from her for a number of weeks and she normally sends funny emails to keep us all amused and generally informs everyone how she is doing.

I’d not got a response from the email so Charito suggested having  look at her Facebook page to see if she had posted anything. She doesn’t tend to keep her Facebook up to date but I took a look and discovered that there were lots of messages saying she will be sadly missed. It was quite upsetting.

Becky has been a guest blogger on here and you can read about her  in her own words here (Greeting Everyone)

Missing you x

Up since 3am–New slippers

The dex has kept me awake (again), I didn’t take any sleeping tablets last night as I was taking Charito to work in the morning and couldn’t risk still being sleepy at 7am and driving!

Decided to go to town after picking up Charito from work at 11am to look for a new pair of slippers. I tend to wear slippers more than shoes at the moment as I spend most of my time at home.

I found  a nice pair of Jasper Conran slippers in Debenhams, but they didn’t have my size. I did intend on buying John Rocha but they didn’t have any. I like most of John Rocha designs in Clothing, I think most of my T-Shirts are Rocha. We ended up looking in various shops and we were going to have a look in Next but it has three flight of stairs. Yes I know they have a lift, but by the time I would have walked  to the lift it would have been the same as walking up the stairs, so we gave that a miss. I couldn’t find any I really liked, so after grabbing a bite to eat we walked back to the car past Next again and I decided to tackle the stairs as I had had a rest (doesn’t that look funny with two hads’). I felt totally exhausted by the time I got to the top and need to rest for a while before looking around. I should have gone their first as they had a pair that both myself and Charito said at the same time ‘I like those ones’. So now I’m the proud owner of a new pair of slippers.

Chester Bloods

 

My bloods came back good again at Chester. I didn’t even have to wait long for the results to come back.

HB 9.0
PL 103
WH 4.8
Neuts 3.8

So another good day with no real problems. They have changed the day that I go to Chester to a Wednesday as it falls inline with the Doctors clinic arrangements. The next appointment I have in Chester will be on Wednesday 2 May. I will be having my bloods taken as well as having my Pentamidine and I should be starting on my Zometa (Zoledronic acid) infusion. This is to strengthen my bones similar to the bonefoss I used to be on prior to the transplant. The bonefoss was in tablet form and Zometa will be infused through a drip and takes about 15 minutes. Some of the side effects are pain (although that should only be for a short while whilst starting) fatigue, flu like symptoms plus a few others that are rare. So basically similar to most drugs I’m taking! I will just have to wait and see what happens.

CMV+

After last Fridays appointment at Liverpool I was expecting to get a phone call on Monday letting me know about the anomaly with my CMV showing positive, even though both myself and Nigel are negative.

I didn’t get the phone call so I was to assume that there was nothing to worry about. The Doctor told me that if he didn’t call then to go to Chester as normal on Thursday for my blood test.

So I was a bit surprised when I got the phone call yesterday evening from the Doctor. It wasn’t what I thought though! He told me that they hadn’t got the results from the CMV test as they didn’t take one on Friday … it takes a few days for the results to come back an he was checking the computer. The only time that I have had an issue with the CMV and it’s the only time they didn’t do a CMV test.

He said he wasn’t worried about it and to just ask them to do a CMV test the next time in Liverpool in a fortnights times. I’m not going to worry about the results at the moment as the Dr didn’t seem that bothered about it at the moment, I think it’s just something they want to keep an eye on. I will find out more about it the next time I’m there.

I took a chance at going to Starbucks again today, the last time I went I was sick, but I think that was just a coincidence.

I’m feeling a bit better day by day at the moment. I haven’t felt right, apart from the cancer, since I had the flu, it really took it out of me and I’m just getting back into blogging and catching up on emails and paperwork.

Hopefully I will feel a bit better day by day and get some kind of normality back before it gets worse again, which I know it eventually will. I must say though at the moment the Lenalidomide regime seems to be working really well for me …. maybe I shouldn’t have said that!

Friday afternoon and evening

After my hospital appointment in Liverpool we drove straight back to Chester and met up with my brother Nigel and spent the rest of the day and evening with him. I did the dirty thing and ate out at McDonalds, something I haven’t done for a very long time. Somehow it tasted really really nice, but only if I didn’t think about the people who where making it in the background and where their hands have been (eewwww).

We talk a walk around TK max and Charito came out with something for the kitchen as she usually does. She was concerned about the amount of walking I was doing, as I don’t normally do that much walking all in one day, both at the hospital and then around a few shops etc. I felt OK with not being on any of my tablets as I was due to start them the next day.

We left Nigel and his friend still shopping whilst we set off home and Nigel joined us later at our home. It was great to have him around and we had a good chat as usual. Again we did an unusual thing and order a pizza for tea, something that I haven’t had for a good few years, so the last few days I haven’t been eating healthy at all. This week it will be back on my veg and fruit and to be honest I much prefer the healthy diet than the junk food, even though it was convenient at the time. I didn’t want Charito in the the kitchen cooking all day. Charito has been busy all week decorating the bedroom, it’s still not finished as she has been taking her time over it as it’s the first time she has done any decorating – I’m doing my usual job of just supervising at the start and then leaving her too. She is doing a great job for  beginner.

So the junk food aloud Charito have a bit of the rest whilst she is on holiday from the School and hopefully next week we can get out a bit if the weather is ok and enjoy the weather.

I think Charito was right though, I did walk too much and even though I had taken sleeping tablets in that night I woke up pain with cramp again. I tried the suggestion of bananas as well, but they didn’t seem to help even though I rubbed them all over my legs! (I didn’t really before I get any silly emails… I ate them).

Something else I begging to associate with the Lenalidomide…. In the past I damaged my nerves in my feet with the Velcade and Thalidomide causing neuropathy and I currently take Gabapentin to stop the pain, which works really well. However during the week of my Lenalidomide the circulation in my feet seems to improve and feet are generally warm, but as soon as I start a new cycle my feet are really icy cold, particularly at the end of the day when I go to bed. I can’t feel my feet they are so cold. I’ve started using a hot water bottle to try and warm them up. It is too hot to touch with my hands, but I can rest my feet on it without even feeling it. Something to keep in mind for anyone that might be starting a similar regime.

Friday at Liverpool–CMV mystery

Charito and I went to Liverpool hospital together this week as she is off work during the school holidays, so we have been spending time together.

We were in an out of 10z outpatients very quickly as Gill was back off her holidays and there wasn’t a queue so everything was done and dusted and we were on a way downstairs with my bloods ready to hand them in and wait the hour for the results to come back before seeing the doctor. The usual receptionist must have been on holiday and the the relief one also as there was a new gentlemen trying to cope with all of the patients arriving and the que was all the way to the double dours about 4 meters away (13ft) but we finally got there in the end. Had my weight taken as usual and gave in my bloods to the nurse.

Heather was in the waiting area but we didn’t get to have a real chat as Charito and I went for a cup of tea and coffee in the restaurant whilst waiting. No soon as we got back that the doctor called us straight in which was unusual, normally I have to wait at least another half hour to an an hour.

Blood results still holding:

HB: 8.7
PL 94
WH 4.5
Neuts 2.3

So they aren’t too bad, but this has been my week off from my Lenalidomide cycle, started again on Saturday.

Something new had come up this week with my CMV check.

I was told that the results from last week were showing a CMV results of CMV+ with a reading of 500 (not sure what the of what the 500 means yet)

Both myself and my sibling donor (Nigel) are CMV- so I was told it was unusual in itself. The doctor is calling me on Monday, depending on the results from this Fridays tests to see if I need to be back in to Liverpool for an appointment this coming week. If it as has got worse he wants to see me!

From the initial search that I have done there seems to conflicting or at least too much information to search through that will give me a difinitive answer.

CMV (Cytomegalovirus) is a common virus that most people have when they are younger and don’t even realise they have had it. It’s part of the herpes virus and spread through bodily fluid such as urine or saliva and spread when someone coughs or sneezes.  It causes few symptoms and most people don’t even realise they have it.

In people like myself who have had a bone marrow transplant (SCT) it can lead to organ damage. What I would like to know is what is the process, which organs, probably liver and kidney and although I have been told it is 500 I have no idea if that is high or a low reading. They implied it was a really low reading and they just wanted to keep an eye on it. If anyone has got a good web site link to the reading and and possible outcome for a CMV+ change on two CMV- people then I would be appreciated it, it the meantime I will continue to try and dig something out and find out what the Doctor days tomorrow when he calls me.

Easter

I’m not one for celebrating Easter, either religiously or commercially. I think personally both a waste of time. Charito on the other hand is very religious and I wouldn’t take that away from her. So on the Friday I took her to town, where there was supposed be a silent walk from the Town Hall to the a local church, starting at 11am. After waiting for quite a while nobody seemed to have turned up so Charito went into the Chester Cathedral instead. I stayed in the car for a while and then noticed that people had started to turn up for the walk later than was advertised on their web site. I didn’t think it would be appropriate to try and ring Charito in the Cathedral so left her there whilst I would go for a coffee in Baristas, just at the moment an old work colleague text me as I had just used Instagram to take a photo of the cathedral and posted it on Twitter and he had seen it and was in Chester at the same time and asked if I wanted to go for a coffee. So we both met up and had a good chat. It’s been a while  since I’ve actually caught up with anyone that didn’t have cancer as most of my time has been in hospital socialising with fellow patients, so I really enjoyed it. It wasn’t until afterwards that I realised that it must be a couple of years since I had seen him face to face although we had spoken over Google Talk in the past on our tablets, were both a bit geeky.

I hope to catch up again with him soon so that we can carry on our conversation and solve the worlds problems as most men do when they start chatting. It beats talking about shoes and bags or jewellery as the women do!

After the coffee I caught up with Charito, who was guess where …in Accessorize looking at shoes, bags and Jewellery!

Blood count up

I had my appointment on Wednesday and I was expecting to have to have a couple of units of blood on the Thursday; however even though my blood count last Friday was 8.2, it had now gone up to 9.3 which is good news. Dr Lee examined me and listened to my chest again and he said it sounded as though I had some fluid on my right lung, which is the side that I have been having the pain with. The last time I was examined they though I had pulled a muscle and since then one evening whilst lying in bed I felt a crunch which was painful on my right side of my chest as I lay on my left side. It felt as though a bone was clicking back in place or muscle was pushing it’s way out of my ribs. Either way it felt a lot better afterwards although still aching slightly.

So it did come as a bit of surprise when Dr Lee said it was a bit of a fluid sound. So he ordered me an X-Ray probably the quickest X-Ray I had ever had. I walked into the X-Room and plonked myself in front of the screen (done many times before) deep breath in, all done and out. I was there for a about 30 seconds I think! The results sent via computer to Dr Lee which he reviewed once he returned from having something to eat. He apologised for keeping me waiting, but I wasn’t too bothered as I was having my Pentamidine later on anyway.

The X-Ray showed something a bit abnormal from the last one I had. I was shown two X-Rays one from beginning of March and this new one. For some reason my right lung has adjust and raised a few inches higher than my left. He couldn’t give me a definitive answer as to why this has happened but and put it down to the fact that I must have damaged the muscles whilst I had the flue. They sent an electronic copy over to Liverpool so that they have a record as well, maybe they can shed some light on it.

I was hoping it would be a quick visit Chester, but I’d forgotten about the Pentamidine although that wasn’t really due until the Thursday and as they could get it ready for the Wednesday it made sense to get it all done on one day. So after arriving at 11am I was out of the hospital by about 3:30pm so it wasn’t really that bad compared to some of the other long days.

I have to last till Friday without needing blood and it will interesting to see how I have done lasting over three weeks without a top up. This is now my week off the Lenalidomide (Revlimid) after cycle three and start cycle four next Saturday. I’m hoping my bloods are finally setting down and platelets don’t get too low.