Long Awaited CT Scan Results

After three months of immunotherapy treatment, last week was time for my CT scan. Since Easter I have been feeling better and better. My energy has come back and I’ve been able to do more and more. Andy and I have been going out a lot more and I’ve climbed the stairs of Layer Marney Tower (eight storeys!) and walked around the Suffolk Show (more than 10,000 steps!). My consultant has been very happy with my response to the treatment in terms of how well I have been feeling and the lack of side effects (which he says can be horrendous and even fatal). My tumour markers in my blood tests have gone down and my haemoglobin remains stable.

Up until this point, my treatment has consisted of Nivolumab and Ipilimumab, but will, from now on, only be the Nivolumab as what they call maintenance treatment.

Last week I had my CT scan (I haven’t had one for six months); We had to wait until this week to get the results. I didn’t get my hopes up as all previous meetings about scan results have delivered devastating news. So, bracing ourselves for more bad news, we went into the consultation room. But this time it was good!

My tumours have all shrunk! Some, according to my consultant are a third of the size they were! The consultant then went on to try to explain, in layman’s terms with diagrams, how the drugs work and how a multitude of characteristics of the cancer must fit certain criteria for the drugs to be effective. Due to the fact that the drugs only seem to work on certain types of cancer (fitting the criteria) and that the side effects are often so awful that treatment has to be stopped, I am blessed because the treatment has been so effective for me. I owe a huge amount of gratitude to Bristol Myers Sqibb for allowing me to have this treatment for free. Also, they have offered to fund my treatment for the next two years or until the disease progresses further, whichever happens sooner. 

So, overall, things are looking up right now and it’s good to feel more positive about life.

Feeling Good

I haven’t written for a while, mainly because nothing much has happened. I have now had three rounds of immunotherapy and feel absolutely fine. I would actually go as far as saying I feel better than I have for months. The only side effect from treatment has been vomiting, which I am just coping with. I have been getting out and about more and more, which has increased my strength so much that I no longer need my walker to support me. Stairs are still really hard, but I can get up them now, when before I couldn’t. We spent the Easter weekend in a cottage down in Somerset and visited Bath and Longleat. Going away was something I never thought I’d be able to do again. 

My haemoglobin has remained high enough (90,95 and 120!) so I haven’t had to have blood transfusions. This means less time spent in hospital and more time to get out and do other things.

So, overall I’m feeling good and long may it continue!

Immunotherapy

I had my first round of immunotherapy a week ago and so far the only side effects have been tiredness and nausea/sickness. I can’t complain though because these side effects are pretty mild compared to what I’ve experienced in the past. Also, for the last two weeks my haemoglobin has been high enough for me not to need a blood transfusion. I’m not sure why, as nothing has changed other than starting the immunotherapy, which has low haemoglobin listed as a side effect.

I have, in the last couple of weeks, found that I am feeling much weaker. My fingers are tingling and sometimes numb and the numbness in my feet is worse, meaning I’m finding walking quite difficult at the moment. I have bought a three wheeled walker which has helped a lot, enabling me to get about without needing to resort to the wheelchair as much. It does make me feel a bit like an old granny when I’m using it though. I’m hoping it’ll keep me a bit more active so that my muscles don’t degenerate as quickly.

My hair is growing back quite rapidly, but darker and and with a bit of a curl which I didn’t have before. I don’t like it, but maybe it’ll be better once it gets a bit longer.

A Year On...

It is exactly a year ago today that I received the diagnosis of bowel cancer. Wow! What a year it’s been. After three lines of failed chemo treatment, sepsis, multiple stays in hospital, I didn’t think I’d still be here. But, I am, and I am very grateful for that. I have so much to be thankful for with my wonderful friends, family, nurses and doctors. I’m just taking each day as it comes and ‘what will be, will be’.

I also had some news at the weekend from my consultant. He had, with little hope, written to a drug company which produces an immunotherapy drug that is unavailable on the NHS, asking them about the possibility of supplying it exclusively for me to try on a named patient basis. He was expecting a, “No,” but they have said, “Yes”. A course of treatment is really expensive (in the hundreds of thousands), but apparently they will supply it free of charge! There is little evidence of any effectiveness of this drug on bowel cancer, but it’s a door of hope when we had accepted that there was nothing else left to try. I’m not sure when the treatment will begin, but hopefully soon. I hope that the side effects are minimal as I’ve been feeling a lot better this last week or two.

Retired

So, the day has arrived for my official retirement. Thanks to everyone who has sent flowers, cards and well wishes. I really appreciate it. It’s been quite an emotional day. 

I am so lucky to have met and worked with so many fabulous people in education and consider myself privileged to have had the opportunities I have had in my career. It’s so sad that it had to end but I’m grateful for the time I did have to devote to a job I absolutely loved.

There’s nothing more to say.

Third Line Chemo

I have a new consultant who started me on the third type of chemo just over a week ago. Since starting on this, I have been vomiting a lot and feeling sick, as well as having severe cramping type pain in my abdomen. On Thursday I saw the consultant again as my tummy had become distended and the symptoms were not subsiding. The consultant decided to take me off the chemo as it was making me so ill. He rightly said that at my stage of cancer, it’s a case of drawing a line between the benefits of treatment and quality of life. We know that any treatment given now will not cure me and the best it can do is prolong life.

It turns out the distended abdomen was a blocked bowel and this has now release itself, though there is still pain in that area. The consultant prescribed some different anti sickness tablets and also some steroids so we’ll see if they help alleviate some of the symptoms. 

My neuropathy in my feet has worsened to the point that there is permanent numbness from the toes to the bridge of the foot. It’s a strange feeling, like when you’ve been walking in the snow for a long time and your feet feel numb. The doctors have said that it is permanent nerve damage from the previous chemo. It makes walking any distance quite difficult, so the wheelchair will be used increasingly I should imagine.

My retirement due to ill health is now confirmed, so I will officially cease employment on 14th February. It has been very emotional dealing with this and the fact I can’t ever go back to work, but hopefully this will now bring closure to the work side of things.

Lastly, I just want to thank everyone who has visited, messaged and read my blog. I’m absorbing all of the love and it really does help me along when I’m feeling low.

Bad News

I have received a telephone call from the Royal Marsden saying that I have not been successful in getting onto the immunotherapy trials due to my low levels of haemoglobin. They said it wasn’t fair to go through another screening process which is time consuming with little prospect of success without multiple blood transfusions which the trials don’t allow without a three week post-transfusion gap.

So I am waiting to speak to my oncologist to get started on Lonsurf (what I believe to be the last type of chemo treatment available to me).

Physically I haven’t been too bad. I’m struggling with dizziness and in the last couple of days my feet have become puffy and they hurt. I’m still getting nausea in the morning and when I get too hot. 

Also, I am still being plagued by night sweats, which Andy is great with helping me change the bedsheets in the middle of the night!

On the plus side we had a lovely Christmas with my children and the baby.