FCR Chemotherapy diary - Treatment Looms

A friendly warning message

As I explained yesterday, I am two years out this week from starting FCR chemotherapy.

Spoiler alert: the treatment worked for me in that I am still in remission, with no sign so far of the cancer coming back, although I have been told it will do at some point (when there will be more treatment available for me).

I do have issues with the regulation of my immune system, however, but these were already a problem before treatment so it is not clear if my situation would have been better if I had different treatments or not. I will share my story with you, warts and all.

But please do bear in mind one thing: not everyone has a bumpy journey with this treatment. My story is not your story. Many people will have a much easier time than I had. And it is also true that other more selective treatments will usually be better tolerated than chemotherapy in most patients.

So please don’t read this and be alarmed. In fact, if you are the sort of person who finds reading other people’s stories stressful than I encourage you to stop now. I wouldn’t want to make your anxiety worse. But if you are the sort of person who wants to hear what treatment can be like from an honest, uncensored perspective then read on.

FCR day minus 6

Today is the first day I can say for sure that in less than a week I’m starting FCR. Somehow that seems huge.

Though of course if I get an infection between now and then they will have no choice to delay and I will feel slightly annoyed they didn’t take me up on my suggestion to start prophylactic antibiotics during this two week delay!

I’m definitely overdue an infection and am more and more convinced that the run of infections I had may have been the same bug growing back since we have had a much longer gap following the extended course of antibiotics I took.

But barring any disasters I’m about to jump aboard the treatment train. I’ll admit that my cool calm collected feeling of a couple of weeks back is replaced by a near constant sense of mild to moderate apprehension. I am able to put it to one side for a while after talking about it or reading up on it but as it gets closer that is becoming harder to do tho I’m getting better at faking that I’ve done that with family members and friends

This is all not made any better by the fact that my fatigue is even worse so I can do even less to distract me. And as I mentioned a day or two back I now have a painful vertebra which is also the one which has a “lucency” which essentially means for whatever reason there’s a hole forming in the bone. And as that bone exists to protect our spinal cord I am of course a little nervous about what’s going on there!

Our illness has a way of throwing curve balls and I could sure have done without this just before treatment. It could also be totally unrelated if course.

Yesterday I was discussed at the MDT (multidisciplinary team) and they would have all looked at my scan (radiologist, CLL expert, etc) and there’s nothing for me to do about either the FCR or the odd vertebra thing except wait to hear what they thought about it on Tuesday at my outpatient appointment.

Well actually I can do a couple of things that are fun and that I may not feel up to doing at times in the next few months. Today I’m going to force myself to cook a large chick pea and vegetable curry and freeze portions of it as I suspect from past experience of being sick my life long love of that will mean that it’s the one thing that might tempt me to eat if I really don’t feel like it. And I already feel less and less like eating tho if I get something I like I can push myself to eat and actually enjoy it.

I also hope to go out to a short one hour prayer meeting at 7pm this evening at the church office. Seems like a mountain to climb. Will require loads of caffeine and probably a willing driver from the family to get me there (I don’t drive if I’m feeling too fatigued at the time and it’s possible I will be feeling wrecked by then!)

Then tomorrow I will be taking most of my family out to a new Turkish restaurant that has opened up near us. I’m guessing that I won’t necessarily want to eat out much in the next six months due to trust issues about how well they have prepared the food.

On Sunday I will almost certainly skip church unless I have a sudden surge of energy as walking the short distance from the car to the service venue was almost impossible two weeks ago. But we will be having a small BBQ with our own and two other families who are some of our closest friends that afternoon.

Monday will be the second visit to my new local Physio who I met yesterday for the first time. She seems to be compassionate, understand my situation, and be willing to push me just the right amount also encouraging me not to boom and bust, and she definitely isn’t a Physio terrorist. She gave me hope saying that over time her goal is to get me strong enough to take me over to the gym. That feels a long way off but just hearing her say that helped no end to feel just maybe there’s a light at the end of the dark tunnel I’m in right now!

Other than that I will do as little as possible on Monday so I’m rested for the next four days.

Tuesday as I’ve said is one last blood test (they need up to date results before treatment) and me again trying to convince them their height measuring device is not aligned properly. They stole two inches from my height which I’ve since had remeasured elsewhere as being the 6’2’ I thought I always was!

Apparently they need my body surface area to get the dose right. So unless I was slouching the other week their device is wrong! These things may seem small. But I do like to control the things I can control.

I will also be consented for FCR as opposed to just the study which I’ve already consented for. So they will go through all the side effects with me and no doubt that will be freaky.

I’ll also talk to them about my ongoing phobia of swallowing the poisonous FC tablets and see if I can get over this mental block. We will also talk about what to do about the piriton they normally give with rituximab as I’m on high dose fexofenadine another antihistamine already and when I had piriton last time it sent me rather crazy (causing over stimulation rather than the sedation it normally causes)

When the hospital transport delivers me back home on Tuesday night I will know that I’ve still got three more days of going up to hospital back to back.

Wednesday is my counselling at the hospital followed by the monthly support group.

Then Thursday is day 1 of the cycle and I guess this diary begins properly then.

FCR day minus 2 nowhere left to hide

Am I strange?

Ok don’t answer that. I’ll just give you a few pieces of evidence!

Bizarrely I kinda hoped that my lymphocytes would be a round number of 100,000 today, the last reading before we start smashing them to smithereens. So seeing 95100 was a slight let down. I’m am hoping that will be the highest they will be for a LONG time. I get that many of you have much higher than that but the issue for me is the rate of growth. It’s doubling every three months so forget 100,000 it would quickly get over 200000 if we did nothing.

I was also almost disappointed that the radiologist had giving a clear diagnosis at the MDT. Apparently I have a Haemangioma in my T5 vertebra. I of course should NOT be disappointed that he didn’t think we needed more tests to rule out osteomyelitis as a bone infection is BAD NEWS. But I had kinda hoped this odd finding might be my get out of jail free card leading to a delay as they did further investigations.

Apparently the CLL cells which are in all our bones (in the marrow) could be irritating the Haemangioma somehow and so chemo might even help the pain I’ve been getting. Here’s a link about these things

But of course this was my last possible “get out of jail free” card. Now it’s definite. Day one will be THIS THURSDAY.

And of course I’m ambivalent about it since none of us really wants to welcome this alien into our lives called chemotherapy. It’s not a welcome guest even tho it promises to do its best to wipe out the even less welcome invaders the blood cancer cells. Which I keep thinking of as thinking feeling beings that are about to have the shock of their life and hopefully death.

The emotional part of my brain keeps insisting on thinking of chemo as poison that I’ve got to swallow (only USA routinely gives F and C by infusion into a vein) and I still have a mental block about actually swallowing those F and C tablets.

Even though I know I should be pleased to have the option to have this treatment (just a few short years ago FCR wasn’t available and I would have been in real trouble)

And even tho I know that if I can bring myself to swallow the tablets that means less trips to hospital. So let’s see if my rational brain can conquer my emotional and swallow the stuff.

This morning whilst waiting for the hospital transport I made the huge batch of chick pea curry I mentioned earlier. Something like 30 Portions now frozen. Not sure yet if I will actually eat it during the actual chemo cycle itself as someone told me don’t eat your favorite food as there’s a risk you will put yourself off it. But certainly in between cycles I can imagine myself eating a lot of this.

The photo is of the inside of The UCLH Macmillan centre which I already feel is like a second home to me as I’ve been here so much these last months. In the next post I will share what happened when treatment actually begun.