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.

The Royal Marsden

We went to London for an initial consultation visit with the Royal Marsden Hospital and, from the information they have so far, there is nothing to exclude me from the clinical trials of the new immunotherapy drug TSR-042 they are trialling. There are many more criteria that needs to be tested for/screened before I would be accepted onto the trial though. They are even taking my original tumour out of storage to take a biopsy!

They invited me back this week to begin screening all of the remaining criteria required for my body to meet. They also need me to have another CT scan before the end of the screening period but they need to do it there in London. Basically they have 35 days to complete the screening process and let me know if I am in or out of the trials.

Really it’s all stuff that’s out of my control but one criteria is that my haemoglobin must be above 90. I can’t remember the last time it was that high. And you cannot begin the trial within three weeks of having a blood transfusion. I think this could be the one that lets me down, but we’ll just have to wait and see.

If I do get on the trials, I will have to travel to London twice every three weeks. It takes almost two hours each way, so it’s quite a trek for both Andy Andy and me. I nearly passed out on our first visit so we brought me in from the car park in the wheelchair the second time.

Otherwise I’m not bad in myself, just tired and can’t get about very much.

Scan results

The results are back and it’s not good news I’m afraid. The cancer has progressed and the tumours have all increased in size. Consequently, they have stopped the chemotherapy I was on - it hasn’t worked again!

My consultant is now going to contact the Royal Marsden Hospital in London to find out if they can offer me any immunotherapy clinical trials. We’ll just have to wait and see.

My anti sickness tablets have been changed again and, although it’s only been a few days, they do seem to be helping. They make me feel very tired though. I’ve not been getting up very early lately and some days I’ve just stayed in my pyjamas all day!

I’m struggling to get motivated for Christmas too. I have no idea what to do for gifts for family I’m unlikely to get to see. Normally we would drive all over the place visiting family, but this year I’m not up to it. Hopefully I’ll think of something. 

In and out of hospital

I’m now a grandmother! Mum and baby are doing fine. As well as baby visits I’ve spent time in and out of hospital and overall been quite poorly. First it was suspected internal bleeding as I had black stools. However, after and endoscopy and X-rays, they can’t find a source of bleeding so they changed some of my meds and sent me home. Then, after a blood transfusion, I had an episode of severe lower back pain which landed me in A&E. They admitted me but are still unsure if it was a reaction to the transfusion or an infection. Now I’m back at home. I’ve got a CT scan on Monday and consultant appointment on Thursday which will give us an update on whether this chemo has done anything. I do feel as though I have deteriorated though. I’m struggling to get about as much and off my food. We’ll see what they say on Thursday.

Low haemoglobin again

Another round of chemo done but I have been really sick with this one; though the sickness has improved since they took the pump off on Saturday. They’ve taken bloods again today and my haemoglobin is at 64, which apparently is very low so now I have to have another blood transfusion tomorrow. Why can’t things just stay normal for a while?

I’ve got an appointment with the consultant tomorrow but, as I’m not due a CT scan until the end of the month, there will be no news. I’m still on two types of antibiotics long term and one is notorious for making patients feel awful but luckily I’m getting on ok with it.

Blood transfusion

PICC line is in.

They let me have chemo this week despite low haemoglobin and low neutrophils, but I had to have a blood transfusion today and also have some additional injections to administer myself for the next five days to boost my immune system. I feel alright in myself though and haven’t had too much sickness so far. I’m still eating ok and the nurses seem happy with things as long as I stay away from any possible sources of infection/illness.

The night sweats seem to have returned though, which is really annoying, so back to sleepless nights and changing the bedclothes at stupid times in the morning.

Two friends I met in hospital have died this week, so on a bit of a low emotionally as we had been a trio that kept in touch and now I’m the last one left! Sad times.

Nausea

Just a quick update

Still feeling sick, though I have had a few nausea free days to be thankful for and I have been feeling a lot better in myself. I saw the consultant today and they are happy to push along with chemo and continue with my meds as they are. I’m getting a new PICC line put in tomorrow ready for chemo next week as I only had the Irinotecan last week without the 5FU.

Thanks to everyone for all of the flowers, prayers and well wishes... I do appreciate them. My biggest thing at the moment is boredom. I can’t focus on much for more than about 20 minutes and iPad games are just not cutting it. I need to get back into reading again but I’m finding it too hard to concentrate... now I know how the kids feel at school!

I can’t walk very far anymore, and I get exhausted really quickly just doing normal daily tasks like loading the dishwasher. It’s frustrating but I just need to accept it.