Yipee my levels are down as predicted and I get to go home tomorrow at 10:00. I will get a scan at 8:00 Jo the Physics lady will calculate my ongoing restrictions and then I am off. Good to see Kate this morning and Gillian this evening.
The time thing is definitely odd. I have tried to tell it like it is and hope this wont put anyone off having the treatment. It is important to remember everyone is different some will feel worse with the nausea others better. At the end of today I am certainly thinking well 5 days of isolation is not that bad and in comparison to Chemo or long term medication well for me that’s not bad at all.
Next I have to arrange weekly blood tests to monitor the effects on bone marrow. Then in 3 months time it will be another 24 hour urine collection to see how my hormone levels are doing. This treatment goes on working for 3 months so not much point testing before then.
In all of this blog I don’t think I have mentioned Prof Strachan (Endo) at the Western General Hospital, for referring me here, keeping me on track, grounded and positive through this whole journey. He and Prof Reed have always taken the time to answer my questions fully in ways that I can get my head round. – I always have questions. Great Team -Thank you so much!
Kind of running out of pictures at this stage. So here is a evening shot from the window. I should say that this must be the quietest hospital ward on the planet. This weekend there is only one other person and obviously they are in a different room. No whizzes bangs or bleeps from equipment so you can sleep pretty well you can even choose to have the doors to the room open or closed. One thing to note there a CCTV camera in the room to keep an eye on you from the nursing station. Total privacy in the shower room though.
I don’t mind spending time alone in fact I quite enjoy it but it was good to get visitors today to break things up a bit. Thanks for the goodies folks. Keith very interested in the lead-lining and may even send a photo of the door, which by the way is lead-lined like the rest of the room.
I have to say that the nausea is not nearly as bad as the last time I was here, I still have it a bit and today its worse at meal times although jelly beans and cream egg went down a treat. Every one is different and everyone experiences the side effects differently but the nurse tonight did say she had heard of others saying they could eat sweet things but not meals.
I have regressed to teenager, eating sweeties, not liking my food watching too much TV, staying up late and sleeping in – in the morning.
Reasons for the differences its hard to say but probably a lower dose of the treatment is the main one. Taking potassium iodide for thyroid protection as opposed to potassium iodate might make a small difference. The other is no Phenoxybenzamine. Phaeo patients before surgery usually have to be blocked with an alpha blocker like Phenoxybenzamine to prevent an adrenal crisis. It essentially brings down blood pressure and makes me feel pretty rubbish. Now my blood pressure is pretty low any way so we decided no need for that, perhaps its made a difference to the nasty nausea.
Time does pass in a weird sort of way. I am now realising I will run out of time to do all thing things I thought I would I wont finish all the books and DVDs I brought in oh well I certainly wont be asking to stay any longer, thats for sure.
The View from the Bunker
Its a better day today sickness wise and I reckon that while its possible to get a bit more sickness the worst is over. Sarah who is my nurse for today also remembers me from the last time thinks I am looking much better than I was before. She reckons if I take the sickness med before bed and then again in the morning I should get though tomorrow with out noticing anything. I think she is a very sensible person.
Andy came in to visit this morning having stayed over night in Glasgow. Visitors only get to stay for 1 hour in a day for their own protection. We decided to show you the view from both sides of the clean/dirty dividing line. The first is the view that I get from my side of the room you can see the lead screens.
The second is the view he gets of me taking a photo of the view from the window, old pink PJs and everything.
Actually today was a very nice day and I have come to think of this window as an Art installation, you can sit up in bed and watch the clouds float by framed by this window.
I had 6.6 GBq of radiation on previous occasions it was 10 GBq. This is because my bone marrow took a bit of a hit after round 3, it did recover but all agreed it would be better to have a smaller dose this time. I said on yesterdays post that the side effects are mild and we think that they should not be so bad this time because of the lower dose. Woke up this morning feeling a bit sick so had to ask for anti sickness meds. The only thing is they make you a bit sleepy, so slept for a large part of the day.
The nausea has passed by tea time which is good and I can have my tea and won’t feel so bad when Andy comes in. Not that it was that bad but they don’t want you actually being sick.
GBq stands for Giga Becquerel which is one of the metrics they use to measure radiation levels. It is named after Henri Becquerel who along with Marie and Pierre Curie discovered radioactivity. Indeed it is interesting to read about the lives of these early pioneers of Nuclear Medicine and radioactivity many of whom died prematurely because they didn’t recognise the dangers. Marie Curie’s papers are supposedly kept in lead lined boxes and are too dangerous to open without protective clothing. Seemingly the only one of the Curie family not to die of radiation effects was Pierre who was run down by a tram.
While in isolation my radiation levels are taken every so often via the Geiger Counter mounted on the ceiling above the bed. The Geiger Counter is named after its inventor Hans Geiger who introduced the first successful detector of individual alpha particles. It is wired up to a box of tricks just outside the room and the readings are taken by Ian or Jo the physics people to determine how quickly the radiation is dropping.
These readings are measured in Grays (Gy) . These are the readings that will determine when it is safe for me to be released into the world and for how long I will need to take certain precautions to protect other people.
Early start this morning to get to hospital between 8:00 and 8:30. Everything is ready to go and first I have to change into what I will be wearing. Everything I am taking into the treatment room is taken away and my bag for afterwards left with the nurses. You dont have to anticipate everything you will need for five days because people can bring things in.
Consent form signed and Prof. Reed reassures that the chemical has arrived in the hospital and has passed its quality control test.
Some peopel think its like a course of radiotherapy that one might have for other cancer types. I think it helps to explain that conventional radiotherapy involves directing a source of radioactivity at a tumour. In this case the patient is turned into the source of radioactivity, and then potentially becomes a danger to others. The danger to the patient is minimal and the side effects mild nausea which can be controlled with anti sickness meds. There is a bit of a threat to the thyroid but that is blocked with potassium iodide or iodate medication which is taken approximately from two days before the treatment.
Cannula in and attached to a drip just to keep the vein open while we wait for the infusion to defrost. Then it is into the treatment room and no going back. Hooked up to a blood pressure monitor to take BP every 15 mins and on the other arms the drip removed and the cannula attached to the machine that administers the infusion over a period of about 1 hour. Its all quite straight forward the physics team and the nurse are sitting just outside the door talking you through it all the time.
The staff are great and have to bring all your food to you on paper plates with plastic cutlery, and all your tea, coffee actually they can’t do enough for you. So its time to sit back in my own little health spa with private facilities read, sleep and watch too much telly.
My pre-assessment was in the ward and it was reassuring to see that the same staff that I had met at my first treatment over 4 years ago are still there. Not only that but they remembered me – oh had I been a difficult patient? They reassured me that the name is not that common and there are not many phaeo patients so they do remember. The nurse went through the standard questions before being admitted to hospital and filled in all the necessary forms. Standard bloods taken, blood pressure and current medication checked. Then it was nice to see the Physics people Jo and Ian and the chance to ask any questions. As I know the drill from before I didn’t really have any, but it was reasuring to find out that they now have laptops and wifi access which will help pass the time. I do remember finding the protocols for nuclear medicne counter intuitive.
This is a photo of the type of room I will be staying in quite nice for a hospital room with your own shower room. Normally you stay in this room the night before treatment just so that everone is happy that you are ok with the surroundings. I managed to negotiate skipping that and will be arriving on the first day of the proceedure. All of the staff here are fantastic and go out of their way to accomodate you, and take time to answer any questions no matter what they might be.
If you look at the picture the wall behind the TV marks a dividing line in the room. One side the one with the bed is the so called “dirty” side and the other the clean side. Not that the dirty side is actually dirty with grime or any thing, but in radiation terms its dirty. On the day of treatment once you cross the line you stay there for around 5 days depending on how quickly each person metabolises the radiation it could be longer. Anything that goes in there apart from reading glasses or hearing aids does not come out and goes to nuclear waste. So it was time to go look out the oldest clothes and oldest PJs, and very small quatities of toiletries. Not to many because we need to keep the amount of nuclear waste to a minimum. I remember the the times when my mum used to say always wear clean underwear as you never know when you might land in hospital. Well the clothes will be clean but certainly not good ones. I seem to recall being told that at one time they gave patients paper clothes, thank goodness they relaxed that one.
I am having my fourth lot of MIBG treatment, starting on Thursday 7 April at The Beatson in Glasgow under the very clever Prof Reed and have decided to blog about the experience. It will give me something to do in hospital and it might be helpful for someone else who is about to have the same treatment to get an idea of what to expect. I will try my best to get the medical bits right I do not have any medical training but if anyone notices errors please correct me. Nuclear Medicine is a highly specialised area which not many people have heard of and even fewer understand.
131I–mIBG The mibg part stands for meta–iodobenzylguanidine and is a radionuclide therapy. This therapy has been used since the 1980’s to treat advanced and metastatic Phaeochromocytoma (Phaeo) and Paragangliomas(PG). It is also used to treat other types of Neuroendocrine Tumours (NETs). That’s almost enough of showing off with the very long words now to try and make that mean something. As I understand it 131I–mIBG is a chemical which has radioactive Iodine attached to it. The chemical attaches to receptors on the tumours and then the radioactivity goes in and nukes them, well its not that instant because it seemingly goes on working for 3 months.
A phaeochromocytoma (pronounced (fey-oh-cromo-sy-toma) is a rare tumour that starts in the inner part of the adrenal gland (the adrenal medulla). The adrenal glands are part of the hormone system and make hormones such as adrenaline and noradrenaline, or if you are American epinephrine and norepinephrine that’s the fight or flight response. This is the tumour type that I have.
Paragangliomas are another rare type of neuroendocrine tumour. They are similar to phaeos, but start in other parts of the body.
Advanced or metastatic means that a tumour can’t be removed with surgery, or has spread to another part of the body.
How is this treatment administered?
This treatment has been used since the 1980s. Most centres administer between 3 and 6 treatments at 3 – 6 month intervals. Response is usually assessed after alternate cycles. This can vary from center to center and depending on the individual patients circumstances. My treatment cycles have been longer because I required major surgery between treatments one and two. Then I had stable disease for a while so no need to treat and we have followed a regime of only treating if there was further progression. This is almost individualised medicine. At this point I still have teeny tiny nodules to the lungs so it is working but one of the nodules has remained stubborn and has grown slightly.
The 131I–mIBG is administered though a canula into a vein over a period of about 20 minutes and that’s it – 5 days of splendid isolation to lie about read and watch telly and be served my food and drink by some wonderful nurses.
I intend to blog about how I get on with the treatment this time round so will provide a bit more information each time.