Chemo tomorrow

Tomorrow is my Cyclophosphamide (Chemo) day. So I must remember to start taking my anti-sickness drug tonight with the others so that I’m not ill tomorrow.

 

What have I been up to today

The answer is nothing too exciting!

We nipped out to town again today to buy the small tables we saw yesterday at Habitat. Apart from that we have just had a lazy day at home.

I have been looking into Social Media and doing a bit of reading to update my skills …. you never know when they might come in handy!!!

Social Media is going to be the biggest advertising medium for 2010 or so the Social Media Gurus would have you believe.  If Pepsi are anything to go by, they could be right. Pepsi who have advertised at the Super Bowl for the last 23 years have decided to have no adverts at the 2010 event and are spending $20 million investing in Social Media campaigns. read more

It might be worth looking into …. a little bit of social media might be good for you.

Bone Marrow Transplant

At my last visit to the hospital I found out a little bit more about the Bone Marrow Transplant I will be having.

I will be having an autologous transplant. Which basically means they will be using my own bone marrow and transplanting it back into me.

More information can be found on the Macmillan site

An overview though is that they:

Extract bone marrow from me, probably from the hip using the same procedure they used to test if I had Myeloma (hopefully not as painful this time around as the Myeloma is reduced). During the process they take out some of the bone marrow.

They may put the bone marrow through a cleansing process (purging).

I will have High Dose Treatment – which means they kill all of the myeloma and the bone marrow in my body.

Then they re-insert the cleansed bone marrow back into me via a drip.

 Risks of high-dose treatment
Extract from Macmillan site

The main problems occur during the time when your bone marrow is recovering. This is when you could have possible life-threatening infections and bleeding. Your doctor will take into account your age and your general health when considering high-dose treatment for you. The upper age limit is usually 65–70. This is because the intensity of treatment increases the risks of severe side effects or of dying from the treatment after that age. High-dose treatment can sometimes be given to people over 65–70, depending on their general health and the risk of the cancer coming back.

This treatment is both physically and emotionally demanding. You may need to stay in hospital for up to four weeks or longer, and there will be times when you feel very unwell.

You need to weigh up the benefits and risks of this treatment, including the possible side effects (especially serious infection or bleeding). It is important to discuss this in detail with your doctor and your family and/or the transplant counsellor at the hospital.

New Year Cancelled

I was supposed to be visiting my brother Nigel for New Year, but after considering various things, I have decided it is best to cancel. As I wont be on the Dexamethazone this week it means I will be feeling very tired again, which isn’t a good start. That and coupled with the fact that I will be having my Chemo on Thursday I don’t think I will be in a fit state to drive over to Yorkshire for a few days. Especially as the weather isn’t good at the moment. I was really looking forward to going, but I think it would be a bit stupid to push myself to go under the circumstance. There is a point where I have to say to myself that I can’t do the same things I used do while having the treatment. I have spoken to Nigel and he understands completely and doesn’t think I should push myself to go and wants me feel better. I’m sure we will have other times when we can get together for a good catch up come the new year.

A Visit to Town

Yesterday was the end of my four day cycle of Dexamethazone, which means that today is likely to be the last day I feel like coping with everything. The Dexamethazone makes me feel ok and I don’t feel tired when I’m taking them. So I took the opportunity to go into town for a bit of a break and get at least some exercise after eating far too much over Christmas.

I did forget though that it was Bank Holiday and the start of the sales! So it was very busy. We took a look around some shops and went for a walk down to Habitat to have a look at some coffee tables, didn’t buy one, but have seen one or two we like.

Not sure how I will feel tomorrow, I will let you know.

James on Guitar Hero

James stayed at our house over Christmas and his Birthday on Boxing Day. Here he is demonstrating his skills on Guitar hero. Playing Sultans of Swing by Dire Straits.

Don’t forget!

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Support MylomaUK donate using my JustGiving page 

  And

My life with myeloma shop is now open

Christmas Day

Feeling ok my plan to feel better on the Dexamethazone has worked so I'm having an alright Christmas day. Dinner went to plan as well and everything was cooked ok and on time. As usual we all ate too much. James and Steven enjoyed it as well.

Christmas pudding didn’t go as planned though … we couldn’t find the brandy sauce that we bought so we had to improvise. Charito has a good idea to use some hot milk with Baileys & Caramel. It worked to a treat. In fact I think I liked it better than the brandy sauce.

Charito is very tired as she stayed up till 5am talking to her family in Peru. In Peru they celebrate Christmas at 12am and have there meal then as well and open all of their presents and stay up all night. As Charito couldn’t be with them this year, she used the web cam and spoke to her family all night and then got up at 8am with me, James and Steven. So very tired indeed. Last year we spent Christmas in Peru so I know exactly how busy it is over there and what they all get up to … Very crazy and busy all night. Fireworks in the streets and lots of parties.

Hospital Cycle 3

I’ve been to the hospital this morning to discuss the progress of my treatment. Dr Lee has changed some of the tablets I’m on after talking the the issues I have had with the Septrin and rash. The results from my blood test are looking very good still. The Myeloma is responding well to the treatment still my paraprotein is reducing still leaving only the good bits and my blood levels have risen again to 10.1 The highest it has been since starting the treatment.

I was gong to go on the nebuliser today to have the Septrin that way, rather than in tablet form. However as it is nearly Christmas and there is a risk of having side effects that could effect my breathing he has decided not to give it me this month and to start it on the 13 January my next hospital visit.

To make sure the rash doesn’t come back Dr Lee has stopped me taking a number of the tablets I’m currently taking and change one of them to another type that is a lower dose. He said basically anything that ends in the letters –zole has a risk of giving you a rash. So he has stopped the following.

• Fluconazole
• Septrin (co-trimoxazole)
• Lansoprazole – changed this to a new lower dosage alternative

I still have to continue with the three main tablets, the CTD

• Cyclophosphamide (chemo)
• Thalidomide
• Dexamethazone

The ones they have stopped are to manage the side effects of the main treatment, so I have to watch out for certain things, but nothing to be overly concerned about.

As well as the CTD I will continue with:

• Tinzaparin injection (daily)
• Ondanestron (anti sickness when having the chemo)
• Bonefos (for the rest of my life to strengthen the bones)
• New alternative to Lansopraz (can’t remember the name of it)

I picked up my prescription for the third cycle and dropped it off at the pharmacy. With it being Christmas as well as complicated prescription, I have left it with them and picking it up tomorrow, rather than wait around for two or three hours while they get it all ready.

So fingers crossed I should be ok over the next few days and be able to enjoy Christmas.

Imitation of a snake!

I have started to shed my skin just like a snake. Now that the rash has nearly completely gone, the after effects are that my skin is peeling. Everywhere where I had the rash, which is nearly all over my body, the skin is flaking and peeling off. The pic is of the top of my arm, but it is the same all over my back and chest. My face is pealing as well but I’m putting cream on my hands and face to reduce it as much as possible.

No Blogging yesterday

I didn’t get around to writing on the blog yesterday, basically I was too tired. Nick text me earlier to check if I was ok because I hadn’t written anything. So in case anyone else is worrying I’m OK. I will post a things here in a bit….. Watch this space  …… well not literally this space, the next blog message along :D

Tired day

I have been tired most of the day today. I have tried to help Steven fit a door for me, but every time I went to do something I didn’t feel too good. I kept getting pins and needles which was probably due to the Thalidomide effecting my nerves combined with the low blood. I hate the days after stopping the Dex I always feel really tired and useless. I think I am becoming a Dexamethazone addict … waiting for my next fix. Hopefully get my next fix on Thursday after going to the hospital on Wednesday. At least I will be happy and feel a bit better (even if it is only in my head).

JustGiving – working

It’s working again now, so if you want to donate using the site, it is now back up.

http://www.justgiving.com/mylifewithmyeloma

JustGiving – gadget not working

The gadget on the site doesn’t seem to be working you can make donations by going direct to the site at:

http://www.justgiving.com/mylifewithmyeloma

Pins and needles

My skin seems to be fitting a bit better today – I’ve been putting on the hand cream to stop them drying up which seems to have helped. I didn’t have much energy yesterday, the first day after stopping the dexamethazone is always a bad day. Today I have a bit more energy, but I keep getting sharp pins and needles in different parts of my face and arms. I will see how it is tomorrow and if it carries on, I will have to speak to the Myeloma team to get some advice. It is probably to do with the increase in the Thalidomide which effects the nerve endings.

JustGiving – donate to MyelomaUK

I have set this to raise awareness and support MyelomaUK all donations gratefully received.

Rash is reducing but…

Well the rash is going down. It isn’t as bad on my hands and arms. I managed to get some sleep without having to put any cream on last night. Still itchy though this morning on my back mainly, but definitely not as bad as it was.

Now I have a new thing to deal with – as the rash is going my skin is drying up. All my hands are cracking and are sore the skin on my ears as dried up and my lips are like shrivelled leather at the moment. I’m drinking plenty of water (I have to drink three litres a day anyway) to make sure I’m not dehydrating and using hand cream when necessary.

I’m off the Dexamethazone at the moment again so don’t feel as up as I have done over the last few days while on it. At least I am off work now and don’t go back till 4 Jan so it makes it a little easier to deal with at home. I should be back on them again next Thursday, so should have a happy Christmas rather than one where I am feeling down. I don’t think the others would like me crying into my Christmas dinner, it might just put them off their pud!

Update on irritation

I think the rash is reducing slightly, although the itching isn’t getting any better. I had to buy some cream to put on last night, I wasn’t going to try and go through another night of not being able to sleep. I’ve got some that is anti septic and stops the itching – it seems to help and I have some on for work today. My hands are drying up and my skin is cracking.

Can’t sleep the irritation is too much

I can’t sleep at the moment tried going to bed but the allergy is causing too much irritation – my back is very itchy. I had a bath to try and relive it, which it did while I was in the bath but once I was out and dry again it started again.

I’m going to try and get some rest if I can its just gone 3am and I need to get at least some sleep before getting up for work!

I’ve been doing a bit of reading to try and take my mind of it, but hasn’t really helped.

I will let you know if I managed to get any sleep tomorrow, or should that really be later on today.

Medical Alert info (ICE)

I forgot to mention that I now have various medical alert info in case of emergency.

I wear a medical alert wrist band that displays my name, what I suffer with and my NHS number.

There is a medical alert card in my wallet containing further details along with a special card with a link and unique id to a web site that contains all my medical records.

I also wear a medical alert necklace that is a USB fob, again containing my crucial medical details.

On my phone I have installed an App that anyone can see when they first turn my phone on that gives them details who to call and my conditions. (ICE) In Case of Emergency

So with all of the above they should be able to find out what is wrong with me if I have an accident or for what ever reason not able to communicate.

Better to be safe than sorry. I don’t want them giving me any medication that could make me worse.

I have to carry a steroid users card as well with me at all times.

Revenge of the Rash

Well the allergic rash is still covering me and is very itchy today. I have taken the anti-histamine, they daily dose, but that hasn’t done anything. The dexamethazone has reduced the swelling to almost nothing, but the rash if anything is worse.

I called the hospital again today and spoke to Dee again. They have stopped the Septrin that I am currently taking to see if that stops the rash. I took a tablet today as I was taking them on Monday, Wednesday and Friday on my Schedule. I’m not sure when I will see the affect of not taking them i.e the rash start to go. Soon I hope as i’m very itchy. I stop taking the Dexamethazone tomorrow again which is slightly worrying as I may start to get the swelling again.

I am back at the hospital on the 23 Dec where they are going to start me on a different method which I will have to have once a month probably using a nebulizer to breath in the alternative Septrin.

So i’m hoping stopping the current Septrin will have immediate effects and doesn’t last too many days prior to returning to the hospital as I can’t stand it at the moment – its becoming more and more annoying.

Birthday

It’s my birthday today. I’ve had a good day overall – the swelling has gone down but still have the rash, it looks like I have a sun tan all over.

Charito bought be a new shaver, so I no longer have to have a wet shave. I can even take this one in the shower with me and save a little time in the mornings.

Had to do a little bit of work today, even though I had booked the day off, but it was for my benefit so I didn’t mind so much.

Went to the cinema to see 2012 if you haven’t seen it, its worth going although as usual you can guess the plot before it happens but quite a good film overall.

Came home and had an enormous steak dinner with pepper sauce. Very full afterwards.

Had lots of birthday wishes from Facebook, phone calls UK and Peru and lots of emails. Even though some of those I would of expected to remember forgot … you know who you are!!! mention no names but they are my children!!

So overall a good day – back at work tomorrow for a few days before finishing for Christmas on Friday. Yippeee.

Doctors suggestion

Well the doctors visit wasn’t much good at all. I explain the situation to them and all they could suggest was go back to the hospital and see if they can recommend a different drug. As I have started the dexamethozone today this will reduce the rash and swelling while I’m taking it over the next four days.  So if it starts again after this, it is definitely not the allopurinol as I have stopped that and points again to the Septrin. The swelling on my face has slightly reduced and I think my hands are slightly more flexible. Hopefully tomorrow when I wake up I wont have a face like a fish (big eyeballs and big lips). The doctor has also given me a different anti-histamine this one is only one tablet a day rather than 1 tablet four times a day. The only problem is it will make me drowsy, so I haven’t taken that yet. I will need to work out the best time to take it. I might do it at night and hopefully ok for the morning. I’m off work tomorrow so tonight will be a good day to try.

I also got the doctor to prescribe more Bonefos while I was there as I have to take that for the rest of my life, I might as well get a supply in before I run low.

Conversation with hospital

I called the hospital first thing this morning to discuss the rash and swelling in my hands and face. There is no reduction in it, if anything it is slightly worse. Dee is off today, so I spoke to Sam, she asked me to call back in an hour, which I have done. They want me to go and see my GP as soon as possible today as unfortunately they are really busy today, but she emphasised that the GP must see me.

I was a little bit worried that the GP wouldn’t see me today as they have a stupid appointment system where you have to ring up on the day in the morning to get an appointment that day. I mentioned this to the Sam and she ‘said they have to see you’ if you have any problems to call her. Fortunately I didn’t have any problems once I explained my situation and I am going to see them at 12pm today.

I will let you know how I get on. Hopefully get this thing sorted!

Still the same

The rash hasn’t gone or even reduced. My hands are still sore and my face is still swollen. The anti-histamines don’t seem to have done anything. If I’m still the same tomorrow I will call the hospital and have a chat with Dee.

Maybe it isn’t as solved as I thought it was!

The mystery of the rash solved!

I went to the hospital this morning for my blood test and to talk to them about the rash as well.

I spoke to Dee and said I though it was the Septrin, however she had a better explanation that explains not just this rash, but the others I had as well and it all makes sense.

Dee suggested that it wasn’t the Septrin, paracetimol or Anti-biotics. Allopurinol one of the drugs I'm taking is the cause! Dee asked me a few questions about when the rash occured and the schedule for the other drugs I'm on and is convinced it is the Allopurinol, and I have to agree. Basically I take Allopurinol every day, it is an anti Gout drug (odd I know). The reason I take this is that the combination of drugs I'm taking produces various acids to be secreted by the Kidneys these acids can then cause Gout. So why don’t I always have the rash, why does it come and go? Well the answer is the Dexamethazone. The Dexamethazone that I take on a pulse cycle stops the rash and is a good preventative for the Allopurinol side effects (see below). So the we have been blaming the wrong drug for the side effect, rather than it being the Paracetimol, which Dee explained would be unusual but not impossible, or the Anti-Biotics it is the Allopurinol. Dee has now told me to stop taking it.

I know what you are thinking, how come I can stop taking it? Well I should back up a little bit to the blood test I had today and the reason I was at the hospital. I have regular tests and reviews to discuss and manage how the treatment is going. Last time I was there as mentioned in a previous post, the regimen was working very well. Today’s results are just as good, if not better. My Paraprotein levels have reduced, leaving the good white blood cells and my overall Globulin levels (blood count) is up from 8.3 to 9.4. So the treatment is working really well. What this means is that my body wont be producing the acids that it first would have been while the paraprotein was at a high of 77. They can safely remove the Allopurinol from my daily list of drugs, which will stop the rash and it wont effect the rest of my treatment.

So no more monkey hands. I still have the rash now and need to keep taking the anti-histamines until it has gone.

So what started off as a really rough day, I’m finishing it feeling quite positive.

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Side Effects of Allopurinol - for the Consumer

Allopurinol

All medicines may cause side effects, but many people have no, or minor, side effects.Check with your doctor if any of these most COMMON side effects persist or become bothersome when using Allopurinol:

Diarrhea; nausea.

Seek medical attention right away if any of these SEVERE side effects occur when using Allopurinol:

Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); blood in urine or painful urination; dark urine; fever, chills, or sore throat; irritation of the eyes; joint pain; loss of appetite; red, swollen, blistered, or peeling skin; stomach pain; unexplained weight loss; unusual bruising or bleeding; unusual muscle pain or weakness; yellowing of the skin or eyes.

Find out more

Rash increased

The rash is now all over my body. I woke up this morning with my throat and face swollen as well. I have taken the anti-histamine to try and reduce it and will see what the hospital say this morning at my appointment. I haven’t taken the Septrin today, I would rather wait to see what they say.

Chemo day today

I had my chemo this morning. I didn’t take the anti sickness drug last night, it wasn’t on my spreadsheet. Yes I know … it sounds geeky, but it is the hospital that provided the spreadsheet not me (for a change). I have taken my anti sickness this morning and will have some more later on as well as tomorrow, just in case. Last time I was sick on the Friday, so hopefully now I have enough anti sickness for two days I should be ok.

Monkey hands are back

The septrin has made my hands swell (again) with a rash. It isn’t itchy, but does sting and I can’t bend my fingers properly. Similar to the allergy I’ve got to paracetamol. So just like a monkey I can’t grip things. It’s a good job I can still type :)

Christmas Tree (instantly)

Hooray for B&Q instant Christmas Trees. Nigel (my brother) told me that he had bought one. What a great idea. Within a couple of minutes the tree was up.

Some people call it lazy, I call it efficiency!.

Newsletter fix

I was just informed by Feedblitz that my subscription form for my newsletter wasn’t working. It has now been changed and should be working ok. So if you have tried to subscribe and couldn’t, you should be able to do it now.

The newsletter gets sent out each week with an overview of the weeks blog. I will also use the newsletter to keep people informed of any other activities going on; such as the Parachute Jump being organised by Amy.

Got through the day

Managed to get through the day OK. My hip was still hurting, but bearable. I took things very slowly. I got upset while talking to some friends though. All of my emotions are screwed up at the moment because of the drugs and everything else. 

Getting upset while at work, isn’t a good thing, but can’t be helped and I’m sure the people I was with understood. They  were very good and gave me a hug. I hope I didn’t make them feel too uncomfortable.

Sign up to my newsletter

The newsletter option on the blog has now been set up. If you don’t want to check the blog out every day, I have set it up so that a weekly newsletter is sent to anyone who subscribes. I will also use the subscription list to send out various other bits that are not contained in the blog that might be of interest as well. For example to keep people up to date with the progress of the Charity Parachute Jump that Amy is organising. To join simply enter your email address in the sign up box and follow the instructions or fill in the details below. (if it works!)

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My Life with Myeloma http://mylifewithmyeloma.blogspot.com Sean Tiernan

I’m back on Facebook

Well I have enabled my Facebook account again. If I have set it up correctly, this post should not only go to the Blog and Twitter but also to my facebook page. Fingers crossed.

I have lost my taste again

My taste seems to have gone again, but this time worse than before. I can’t really taste anything at the moment but really strong things. I had my meal which didn’t taste of anything, I was just chewing. I couldn’t eat it as it was so bland.

I then tried the ice cream which was what I could really taste last time it happened. The vanilla I couldn’t taste at all and the mint and choc chip I could only just taste. I can’t taste apples either. I have just eaten a packet of Worcester sauce crisp, which has some kind of flavour to it. I think this is caused by the increase in the Thalidomide tablets I'm taking.

My leg/hip is hurting

I don’t think the chair is good for me at work. Spending a lot of time at my desk doesn’t seem to be doing me any good. By this afternoon my leg/hip was really hurting.

Since being home I've taken some of the strong pain killers to try and reduce the pain and hopefully be ok for work again tomorrow. I can’t really take the pain killers during the day as they will make me drowsy and I wouldn’t be able to drive or concentrate on anything.

Twitter now available

Hopefully you should be receiving the updates again now on Twitter. I have got them to open to the IP address to me.

Can’t Twitter from work

Sorry to anyone who is following the blog via Twitter. The Twitter site is blocked from work. I will try and get it unblocked for me at some point.

Starting to suffer a little now

I’m feeling it today now. I’m sitting here at work aching again. My hip/leg is starting to hurt again. I don’t really want to start walking around as it seems to aggravate it. I only have a couple of hours to go so might as well stick it out for now. At least when I am home, if it doesn’t get any better I can tell the pain killers that will knock me out tonight, rather than during the day.

Getting ready for work

Right i’m going to get my shower and get ready for work. Not sure if I will last all day, but will try.

I need to take my tablets after and inject myself with the usual Tinzaparin. I’m also taking my new tablets again today Septrin (Co-Trimoxazole) hopefully they wont make me feel sick, but I will let you know later.

Cant sleep

I’ve been awake since 3:33am this morning. I think the Dexamethasone won the battle tonight over the Thalidomide

Feedburner Problems again

A bit technical, but I have had feedburner problems with my blog again. It stopped the blog working again, so I have given up on using it and moved over to another RSS feed. This one should be a more reliable than the Google Feedburner. It also enables me to do email newsletters etc that I will be setting up at some point once I have got my heard around it.

Parachute jump update

A few people have shown interest in the parachute jump and want to know more details. I have spoken to Amy and she has all the information that you need. For further information please contact Amy on her email address which is mimilou20@hotmail.com she has given me her permission to post it here for you to contact her directly.

Para mi familia en Peru

For those in Peru who want to read more about Myeloma in Spanish.

Esto es para mi familia en Peru. Todo es en espanol circa Myeloma.

La International Myeloma Foundation Latin America está aquí para ayudar a todos los que luchan contra el mieloma: pacientes, familiares, amigos, cuidadores y la comunidad médica y científica.

Tired after shopping

I’ve been out doing a bit of shopping today. Probably over done it a bit. I met up with Nigel (my brother) and Anne for a coffee, they have been over here from Barnsley for a couple of days. Me and Charito went around TK Max. Standing around for a long time in the shop and not sitting down didn’t really do me any good. I started to get the shakes again. Since increasing the Thalidomide to 150mg a night I seem to get the shakes in the morning. I feel rather tired now and just resting for a while. I have to be careful about how much I do as I am still Anaemic and run the risk of falling below the level where they want to give me a blood transfusion if I get too much out of breath and have no energy to do anything, which I am trying to avoid as much as possible.

Twitter

If your not on Twitter, why not? I would love to know what you are all doing during the day and what you have been up to. All my post on my blog are automatically linked to twitter so you will know when I create a post. You can add me on Twitter sean_tiernan

You can update your Twitter via your phone or email or log on to the site. There are various apps to update twitter both for you computer or your phone.

So go on…. why not join in and create your own Tweets?

Red Wine

Red Wine, Resveratrol, And Multiple Myeloma: The Evidence Is Promising, But Needs Further Study

Parachute Jump

My three children are planning to do a parachute jump in aid of Myeloma awareness. I have contacted Myeloma UK about support material and promotion and will let you know what they say when I get a response back from Lawrence.

If you wish to get involved or sponsor them let me know and I will put you in touch with Amy who is organising it. I think they are looking at doing the jump in about August so you have plenty of time to get involved.

Myeloma Infoline 0800 980 3332

Myeloma.org.uk has an infoline that you can call with any questions you have. You don’t have to be a cancer sufferer to use it. It is free and they will provide help and advice to anyone. You can find more information here

Hospital appointments

I have two appointments arranged for the hospital. One on Friday 11 December and the other on the 23 December.

The 11 will be for blood test and the 23 to get the next cycle of treatment and meet with Dr Lee again.

Good day today

Today has been a good day. No pain or sickness or anything else. I have felt almost normal today. Did a bit more at work and been shopping at ASDA.

All the decorating is finished and new carpet fitted today. So hopefully more days like today through the rest of my treatment will be good.

Allergy

Well the aching leg/hip has gone; however I found out I am allergic to the paracetamol! While I was in hospital I came out in a rash. They thought it was the Antibiotoics and so change to a different type and gave me antihistamines to clear it, but I now know that it was the paracetimol. While I was in hospital they put me on a drip of paracetimol to reduce my temperature as well as the antibiotics. I have had paracetimol before without any problems, but it looks like the strong dose they gave has triggered a reaction. From the two tablets I took last night I woke up with my covered in a rash and my fingers swollen.

I called the hospital team to see what other pain killers I can use apart from the paracetimol. I told them about the pain in my leg and the problem with my hands turning into monkey hands (couldn’t grip properly as it felt like all my skin had tightened up and looked very chubby). I can’t just take any painkillers as they can effect my myeloma. They have given me a prescription for Codeine Phosphate, it was either that or Morphine.

The pain in my leg is no longer their today, but they have given me the Codeine in case I have any more pain, so I have it to hand when I need it. They will make me drowsy so I can’t drive when I take them. So any time I have bone pain I will need to stay at home and rest. Lets hope that doesn’t happen too often.

I have been taking the antihistamines throughout the day and the swelling and rash has almost gone now.

I also had a dentist appointment today and had three filling done. So today consisted of a numb face and monkey hands.

Anonymous questionnaire

I forgot to mention that the questionnaire is completely anonymous so feel to ask any question you like. I wont know who has asked it. Someone has already asked a question about my sex drive which I will answer in a post at some point!

A simple questionnaire

Aching leg

Typical … one of the questions Dr Lee asked me at my appointment this morning was if I had joint pain. I didn’t I actually felt really good. Went back to work and at about 4 O’clock I started to get some pain in my right leg/hip. I came home had my tea and tried to rest, but it was still aching. I went for a lie down and took some paracetamol to ease the pain, which helped for a while. It is still aching now but not as bad as I am just sitting here resting. If it continues tomorrow I might give the team a call at the hospital to get some advice.

Responding well to treatment

I had my appointment at the hospital today with Dr Lee my consultant. I have just finished the first cycle of the CTD treatment so it was a catch up of how I am doing and what they will be doing for the second cycle.

When I arrived they took the usual bloods and then I had to wait about 20 mins before seeing Dr Lee. He brought up my case on the computer and already they had the results from the bloods they had just taken. That impressed me, I was surprised at how quickly they turned them around. He ran through the results and there were lots of them on the screen. One of the more interesting bit was a graph showing the paraprotein levels before starting the treatment to where it is now after 4 weeks. Dr Lee was very please with how the myeloma is responding to the CTD treatment. He explained that a normal persons (always knew I wasn’t normal) level for this reading was 35 (not quite sure what this reading but I was happy to listen) before starting the treatment I was 85; however already just after 4 weeks mine had reduce to 37.5 which was pretty impressive.

The minimum amount of treatment they give anyone is 4 cycles, normally it is at least 6. They are looking at only giving me the 4 as I am responding so well.

He has also made some alteration for this next cycle. One of the good things is that I only have to have one day of the cyclophosphomide (chemo). He has increased the Thalidamide from 100mg to 150mg a day. This is what is having the most dramatic effect on the myeloma. He has also started me on a cycle of Septrin (co-Trimoxazole) which I have to take on a Monday, Wednesday and Friday. Unfortunately this comes with side effects, which can be either sickness or a rash. Hopefully I wont get either, but knowing my luck I will get both! I am also on Bonefos (Sodium Clodronate) now which I have to take everyday for the rest of my life to strengthen my bones.

I have a new spreadsheet with all of the tablets on showing which ones I have to take on which days etc for this cycle. The list so far is:

• Cyclophophomide
• Thalidamide
• Dexamethasone
• Allopurinol
• Fluconzole
• Ondansetron
• Tinzaparin injection
• Lasopraz
• Co-Trimoxazole
• Bonefos
• Movicol
• Lactulose

I had to wait over an hour for the pharmacy to get the prescription together at the hospital, but I came away feeling really positive with the results so far. I hope to continue with the good progress so far and then look at getting the bone marrow transplant sorted in about 12 weeks time.

Back into the swing of things

So far so good. A little tired but a good day today. Started getting back into the swing of things and dealing with a few issues. I’m not pushing myself too much at the moment as I have found that my concentration doesn’t last and I get tired quite quickly. So i’m having plenty of breaks and just taking it easy.

It is Rachel birthday (one of my staff) tomorrow, although she is off then so we have given her the present and card today along with lots of chocolate and cake. Which has been good and I feel a bit sick after stuffing my face with far too much cake !!! Don’t tell Charito though as she will tell me off :D