A Mixed Bag

Colin took me to my appointment today, bit of a mixed bag. They still aren’t sure if my spine is better or worse! I’m a complicated beast it turns out. Basically one of my tumour markers CA125 has risen a fair bit since they were last tested, however the other tumour marker (CA153) has gone down! They really aren’t sure what’s going on! So my onc wants me to have another MRI and a CT. These actually tie in with my regular scan checks anyway so all good. If the area at the base of my spine has got worse, then I’ll have to have some radiotherapy. Rads is fine though, I can defo cope with that.

My onc has asked me if I can be a case study! I’ll be written up (completely anonymously), as an example of not rushing into unnecessary treatment. So if another less savvy onc than mine had seem my brain scan and assumed it was mets, they could have gone straight to treating them. However, mine looked at my notes and considered my potential neurofibromatosis. Thank goodness she did.

Basically I have cytomas in my brain which are benign and are as a result of my NF1. She could have just assumed they were brain mets. So that’s why she wants to write me up! I’m interesting medically because:

- I was diagnosed young first time round, just 28

- I have secondaries

- I have neurofibromatosis type 1

Then we went up to Comet Ward for my denosumab, easy as ever, injection in the tummy and that’s it.

Results....

I am fecking delighted to let you know that the cancer in my sternum that was causing the most concern is gone! The cancer in the lymph nodes affected is gone! The rest of my affected bones are stable and there is no spread to my organs. Yes I still have cancer and always will but for now treatment is working!

Good Results!

I'm very very pleased to let you know that the lesions in my brain are not mets. After two brain scans and some terrifying waiting (6 weeks!!) I received the good news. I'd been waiting for so long because the second set of scans had to go to neurologist specialist teams at St George's. They confirmed that the lesions certainly do not look like mets and that they will scan me again in 3 months to keep an eye on things. Huzzah!

Stepping out of the shadows

So I haven’t blogged properly in a long time. The truth is it’s been a difficult ride of late. So, what’s new in JojoLand:

1. I’m no longer on the trial. Ribociclib had some seriously severe side effects which were impossible to cope with. I had already dropped down to 2 pills but it made no difference. We ended up having the “quality vs quantity discussion” but in the end it was taken out of my hands as TC made the decision. It’s supposed to be a wonder drug but with the side effects it causes it’s just not worth it.
2. I’ve been in A & E 3 times in as many weeks. First time for severe back pain, sent away with oramorph. Second time for either a reaction to the contrast I had during or a severe panic attack. My heart rate was at 130 and stayed high for hours.Third time (ie now, blogging from my hospital bed) was for suspected spinal cord compression. It’s now been confirmed it’s not that thank goodness! My MRI scan did show a “white spot” at the top of my spine though, I found out a few hours ago it’s not mets, I burst into tears when they told me. Apparently it’s just “an anomaly” that could have always been there...
3. I had a brain scan. The most noisy, claustrophobic scan ever. I’m waiting for further results on this. They have come back already as “abnormal” which is obviously shit scary. Cross fingers for me please.
4. I’m going to need a new treatment plan. Once I find out wtf is going on with point 3 above then I’ll be in a position to move forward but for now I’m stuck in limbo land.
5. I saved someone's life. I gave a man CPR and made him breathe again.

Cycle 1 - Halfway check

So I've just had my two week check for my first cycle on my trial drug. Rob drove me to Guildford and we met with Avril (the research nurse), she sent me off for my blood tests. I had to wait for about an hour for my bloods to be taken and once they were done we met Avril again. I was feeling really anxious and shaky, we chatted about the side effects I've been having and I was then sent off for an ECG.

Common issues from my trial drug at this point are low blood counts, rarer are issues like heart problems.

We were waiting to meet TC when Avril came to see me and told me there is an issue with my heart rhythm. Fuck. The QT something or other was too high. I had to wait for an hour and then have another ECG.

We were waiting for ages to see TC, and when we were finally called in, my second ECG also showed that the QT rate was too high. The rate had reduced since the first one, but not enough for the trial parameters or to actually be safe. Therefore they've taken me off the trial drug for a week but I still continue with letrozole. 

TC said not to worry and that at the start they will always play around until they get the dose right. Easier said than done though. I guess it makes sense, as why would a dose for me be the same dose as say a 15 stone woman... I have to go back in a week for a repeat ECG and then they will look at what to do, probably reduce my ribociclib dose down. I've just got to hope this is what happens rather than getting taken off it all together.

I also told TC and Avril about my lack of sleep. Although when I take the diphenhydramine I manage to sleep fitfully (as in I still wake multiple times a night but I manage to fall asleep again after the night sweats), it still isn't good sleep. So he's prescribed me something called zopiclone which I will take tonight:

Zopiclone boosts the effectiveness of a chemical in the brain called gamma-aminobutyric acid (GABA). GABA blocks transmission across nerves in the brain and has a calming effect. By boosting the effectiveness of GABA, zopiclone improves sleep.

Then yet more waiting until I had my adamantium which was pretty much the same as last time, apart from the fact every chair was full of different people receiving treatment. When I last had it, I had the ward to myself. I've just got to hope I don't get the horrible pain tomorrow like what happened 6 weeks ago, please please!

I'm on the trial!

Today I had an appointment at Guildford hospital with my trial onc TC and my research nurse Avril. Avril told me that the bloods I had done last week were all within the range for the trial protocol and then she sent me off for an ECG.

I last had an ECG back in 2012 to check my heart was okay for chemo. This time I went in to the room, took off my tshirt, the lady conducting the ECG put about 8 sticky pads on me and attached clips to each of them. She turned on a machine, it beeped and less than thirty seconds later she took the pads off and gave me my printout.

We headed back upstairs and I gave my printout to Avril. We waited for about ten minutes and then were called into a room with Avril and TC. It was then I learnt that I'm on the trial! So although it's all very unknown and therefore scary, I'm on what TC says is "the best treatment on planet earth right now" for my kind of cancer. Thank you everyone who has had their fingers crossed since June 14th!

Unfortunately the results from last weeks scans weren't back, but based on my PET scan results TC was happy to go ahead. We asked him to go through the PET results in more detail, so I now know that (in addition to the lower lumbar region that I found out about last week), the bastard is also in one vertebrae higher up and my pelvis. At least this explains the pain. It does upset me as he originally told me it hadn't spread, however, TC said these mets may have been there all along and at the start of this shitty journey, I hadn't had a PET scan. I.e. The mets would not have been picked up on just a CT and bone scan, it needed the more detailed PET scan to spot the buggers. The other thing he mentioned was a slight "something" on my lung. This frightened the hell out of me. However, he said the PET scan shows cancer through cell activity taking up glucose and this 1p sized area was not doing that, which makes it unlikely to be cancer. So scarring from a previous infection or something similar. Obviously, having been dealt blow after blow, I want to believe what he says, but it is still scary. Now I'm on the trial, I will be monitored fastidiously, so if this area does turn out to be suspicious, at least I'm having scans etc that will keep an eye on it. TC said he wasn't concerned about it, I just have to trust him.

We then had to wait for over 2 hours for my meds to be dispensed. Apparently because its trial medication, it will always take this long. Eventually we got my drug stash and had another meeting with Avril. She went through how to take them and also gave me a tick chart to ensure I mark off having taken them every day. This really satisfies my Jo-CD. Lastly she gave me a card which I have to carry at all times. It contains details of my trial and important contact numbers. If you are ever with me and we have some sort of medical emergency, please ask for my card!

We then drove home and I took my first dose!

Bone scan, new drug & a bit of a blow

Today I went to Guildford for my bone scan for the trial. First we had a chat with the trial nurse Avril who wanted to see how I was and also wanted to discuss my new hormone therapy drug letrozole. We spoke about my anxieties about eating and my nausea and also about my pain in my left hip and back.

Avril then revealed some sad news to me, the cancer is also in my spine. Fuck. It's in my lower lumbar region. I can't begin to explain how devastated this makes me. I know it won't change my treatment plan, but just knowing it's somewhere else is a complete hammer blow. To me, spine damage means more risk of paralysis so I am beyond terrified.

Then I had to go down to the nuclear medicine room for some bloods to be taken (again from my sore arm!) and have a radioactive injection for the bone scan. Both went without a hitch thank goodness and then we went back up to wait for my meeting with my trial oncologist TC.

We waited for about an hour and then had my meeting with TC. He again waxed lyrical about the wonderful ribociclib drug, gave me lots of advice on nutrition and spoke to me about my fears about the side effects. I also explained how devastated I was to receive the news about my back. He told me  that it really didn't make a difference to the plan and that I was just to control any pain with painkillers. It's hard because I'm so scared about it, but he seemed not to be concerned.

After the meeting, I went down to nuclear medicine for my bone scan. I lay on the bed and the camera came very close to my face. It took about 35 minutes. I could see some images on the screen near me. Now obviously I don't know how to interpret scans but I could see my skeleton and bits on it that were lit up. Last time I had a bone scan I saw loads of lit up areas all over my ribs, I couldn't see much at all there this time so hopefully that's a good sign and means the rads worked. I could still see the sternum shining and a bit in my shoulder area, but the new bit I couldn't see last time that I could this time was my hips and lower back. So with the news I'd just been given about my back, this makes sense. Last time I didn't know I had secondary cancer, this time I see the areas and it's just a case of being more informed.

After the scan I went back up to find Avril who gave me my prescription of letrozole. Earlier I had explained to TC how scared I was about the side effects of this drug. He said that yes I may get some SEs but that if I took the pill that afternoon, by bedtime, cancer cells would be being killed. Blimey.

We got home and I took the first pill. So a difficult and overwhelming day, but at least the systemic fight has started.

Ovary Scan

Today I had a phone call from East Surrey hospital saying they had a cancellation and could I go in that afternoon for the scan on my ovaries. Not an ideal way to spend a Saturday afternoon but hey, if it means things get moving quicker then let's get on with it.

We arrived early and as there was no queue I was seen straight away. It was a fairly "invasive" scan but was over in under 10 minutes. The lady doing the scan very kindly told me then and there that everything looked normal meaning I didn't have to wait for any results. It's definitely the little things like this lady's thoughtfulness in telling me straight away that make this journey just a tiny bit easier.

To add a bit more polish to the shiny news, the car park ticket didn't charge us for parking either - small wins!

PET Scan

So today (one month on from receiving the dreadful news) I had to have a PET scan. That takes me to 8 appointments this week (5x rads, 2 x oncology appointments and this PET scan) at three different hospitals. I am absolutely exhausted, this is fatigue like I have never felt before. I cannot think straight or even string a sentence together. Typing this is probably a stupid idea. In fact, it definitely is. TBC after a sleep.....

It's amazing what a restorative sleep can do! Feel betterer enough to type and actually make sense!

So this morning I had to have a PET scan at Guildford so that there are baseline scans to compare things to if I get on the drugs trial. I had to fast for 6 hours before and drink a litre of water. We arrived at the imaging unit and I was taken in to the scanning area. There I was given a radioactive glucose injection in my arm and then had to lie down for an hour (no reading, no phone, no iPad) whilst the radioactive material worked its way round my body. After the hour I had to pee so I had an empty bladder and then was taken to the scanner. It was a bit like the CT scanner I'd seen before but more enclosed. I had to lie on a bed, arms above my head and not move. The scanner whirred around me and I moved through it. Half an hour later I was done. You don't feel anything whilst having it, just a bit claustrophobic. Then I had to pee again (they like you to get as much of the radioactivity out of you as possible) and I could leave. I'm not sure if I will actually get sight of any results from this or not, I suppose only if it brings any bad news of spread elsewhere. Whilst I am hoping beyond hope this is not the case, I am pretty convinced it's on the other side of my hip as this area is hurting very much at the moment. At least I know that if this is the case, I can have rads on it or the upcoming systemic treatment (whatever that may be) would get it. At least I'm in the system now.