There’s good news and there’s not so good news. I can’t say there is bad news because that just isn’t right.
Today has been challenging. I left home at 8.30am because I wanted to be ultra sure I got to the hospital on time and could get my bloods done before my appointment for scan results. I cannot believe it took me an hour and half to go a normal twenty minute journey. That was fine as I got there just in time for my appointment. But then had to wait over an hour to be seen. And sadly not by Prof Harris as he was away. (We were both so looking forward to seeing the Profs ‘happy’ tie )I knew as soon as they told me that I was to be seen by another senior oncologist that the news was not going to be great.
To be honest that was the worst of it. Waiting. The knowing. The dread. The look on both of our faces. That’s the worst feeling. Once inside the room and sitting with the oncologist then anticipation is over.
The news wasn’t what I expected. I had a really good feeling that this time was going to be ‘my’ time. That something brilliant had happened. Everything inside me tells me I am well. I feel not only physically brilliant but mentally and emotionally. The scan results as usual are confusing and do not correlate to the previous scan. It’s like trying to decipher code. But on looking at the actual scans on screen I can see some changes. But not much.
So that’s a positive. The long and short of it is... I have had, what’s known, as disease progression in the tumours in my lungs. They appear to have increased by about 20% in the right lung and lymph node. The left lung doesn’t look like there has been much activity but they ‘assume’ that they too have increased. (Would it be so hard for a bloody radiologist just put details of everything they see? And can they please not confuse upper and lower lobes?!) We are still talking small sizes no bigger than 2.3cm. But that is still an increase and I have to say I was hugely disappointed.
BUT then I was hugely relieved.
I have not had any disease spread to any other organ or bones. Phew! That makes me so happy! So I am still containing it but the onc reckons that the chemo, Vinorelbine is not doing anything. There is an argument there that it could be doing something and that in fact the tumours grew a lot in the time I wasn’t taking any chemo and have gotten small since but the onc's gut feeling is that it isn’t working.
So onwards to the next treatment option. It has been suggested I start Eribulin. Nicky, the oncologist was excited by Eribulin and has seen good success and it could help me survive a lot longer. It sounds like she has to request funding for it and is only given after a patient is on their third line of chemo. The down side is that I would lose my hair again and probably feel rotten and it’s given intravenously. But that’s what they said about the last year of chemo. I don’t relish being bald again but hey ho... It’s just hair and men lose theirs all the time! The other option is Carboplatin and Gemcetibine. This we have heard of. And it has been quite successful for many.
Pete and I sat there so overwhelmed with what to do next. It’s so hard making decisions when you simply do not feel ill and when every cell in my body is saying, ‘don’t have any more treatment’. But the other part of me is saying, ‘give me it all! I don’t want to get any worse’. It is so hard making decisions about life and death. We decided to let the onc know tomorrow once we have thought about it but we think we have already made a decision. I am going to finish this cycle of chemo I am already on. Then I have a few weeks till I go to Switzerland to have GcMAF. In between now and then we hope to hop to Germany and have some more DC therapy. I have contacted Doc Nesselhut and await his response.
During our appointment the onc did mention that maybe, just maybe I could have the larger tumours ablated. We have discussed this with Prof Dalgliesh before but he hasn’t got back to me. So we agreed for her to try and get the go ahead through the NHS. Nicky did say not to get our hopes up. Why would I? It is the NHS after all. The reason for not doing it would be that I have other lungs mets and that it would be pointless. I am sure the radiographer would feel differently if it were his life or someone he loves. Any who....
I had a little wobble, a few tears afterwards, but then had a big Bear cuddle and came home. Pete went back to work and life goes on. I feel remarkably well. I am bit confused as to what I am doing differently that is causing the canSer to grow. I feel maybe that the treatment in Germany needs to be intensified and more often. There are other things I could be doing but then there is so much out there to choose. It’s so hard to know what to do next and I wish someone would just tell me! But what works for one may not for another.
All I know is that nothing is different for knowing this information. Really not a great deal has changed. When the tumours were that large before I had pericardial effusion. There is no mention of that. So the lymph nodes are currently working OK.
So not all bad. See the positive in every situation. We also got to meet a lovely TNBC supporter whilst waiting. A canSer patient who looked really well and came and talked to us. It’s so great knowing that people follow us and our story and that they feel it helps.
I wish I had the best news for everyone and could tell them that there is one particular fail safe treatment. But I can’t. Not yet at least. We are working on it!
So what’s next? I have to consider other treatments such as intravenous vitamin C, chemo-perfusion, mistletoe, RGCC testing, Halean 951 and more. Not sure where to start. Best get researching some more....