Out and about to #StopHS2

 

Change of Direction

 

Friday 19 February 2021

So it seems my bloods are normal but what is worrying is that my CA125 has gone up again to 130 something. Given that at my worst state my CA125 were over 3,000 it does not sound too bad but it does indicate that the maintenance drug is not working. Having said that, I havn't had it for 6 weeks anyway because the side effects were too strong. So my cancer is on the move. How strange to think that stuff is happening in my body and I have no idea it is going on.

I had a CT scan planned for next week but by fluke I managed to get a cancellation and had one on Wednesday. That means perhaps there will be a plan of action early next week.

It is likely that they will put me on another chemo called Caelyx (liposomal adramycin ) every four weeks. It has different side effects. The main one being affecting my heart so I have to have a heart scan before starting treatment. The other is a skin rash in hot places on the body, under the arms, under the breasts, the groin ooooh lovely. They do give lotions and potions to help. My hair won't fall out so that is a plus as it is only just getting to a length where people don't automatically assume I'm a cancer patient!

This is a bit of a blow. Even the consultant was surprised the cancer has started shifting this early. Quite often people get 6 months or a year or more after the end of chemo before stuff starts to happen. Looking back on my 6 treatments I only had the full whack a couple or three times. The rest of the time was only one drug or a much redused dose. My body just could not cope with it. It reduced the cancer by a third but after that it did not do much.

I had got used to the idea of the maintenance drug every 3 weeks and that would be my pattern for a year. Now I have to get used to the idea that there will be a different pattern and I don't know how I will react to this new drug. Will it give me fatigue? Who knows. Off into the unknown once more. A sign of the times, getting used to some sort of plan and then having to erase it and come up with a different one ! ! !

Wall Poetry

 

 

Some poetry to brighten your day

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Exhibit Tendancies

 Tuesday 26 January 2021

A telephone consultation with Dr Quinton. My bloods are back to normal We Hey ! BUT I have a problem with high blood pressure. The thing is, it is a known side effect of the Avastin maintenance drug. The plan is to have a lowering of blood pressure pill given to me on Friday and hopefully that will help the protein in the wee as well (or have I misunderstood that bit?) My kidneys are complaining!

The bad news is that the cancer marker CA125 has started to go up rather than down. 6 weeks ago it was 11 then 3 weeks ago it was 17 and yesterday it was 33. It is still within the normal range but you have to ask why is it going in the wrong direction? I am going to have a CT scan on February 25^th to see what is going on.

A telephone consultation with the thrombosis clinic. They are happy with my bloods and are going to half the dose of apixaban. We talked about my bleeding gums and he is going to put a special mouthwash on the prescription. Must not do it at the same time as brushing teeth as it reacts badly to toothpaste! ! ! ! (green teeth anyone?) Another 6 months of a lower dose

Friday 29 January 2021 

My blood pressure was definitely too high this time and the protein in my urine was no longer a trace but up to level 3 and you can't go higher than that! So I spent some time waiting to see a doctor and then waiting for the doctor to get hold of the consultant and then after a long while I was told to go home. I was given the blood pressure medication which is Amlodipine and told to come back next week to get a 24 hour urine collection bottle so that they can test it in a more sophisticated manner and see how bad my kidneys are.

So what happens if my body cannot handle this drug anymore? Well there are other immunosupressant drugs I can try. So this is not the end of a line, something I was quite pleased about. When I first heard of a year of 3 weekly maintenance drug sessions I was appalled but now I am terrified at the thought if not having something that suppresses my cancer! How time changes everything.

I have now 3 weeks to possibly feel like 'normal' what ever that is. The oxygen in my blood is 100% How cool is that ? Added to that I have been given the first dose of the covid vaccine.