I am writing to you with a permanent lump in my throat, a hot head and severe heartache. My dad has thymic cancer, he was diagnosed earlier this year and his story runs almost parallel to Steve’s (on your site https://www.thymic.org/Steve.htm). However, Steve’s story is very positive and he has been so fortunate with his success. I can only wish him from the deepest of my heart that he continues to be in the clear.
My father has undergone chemo, he was told the tumour was 100% inoperable but a private Harley Street surgeon said that he would try his absolute best. He was operated on for 8 hours but they could do nothing other than take a wedge of the tumour. My dad has since had more chemo – to which there has been less than a partial response. He is waiting for his body to heal from the chemo and the operation so he can start radiotherapy at the end of August.
My mother broke the news to me yesturday that the radiothearpy isn’t actually going to do anything, it will buy my dad a couple of months but really it is an addition to what will be killing him. I did not know this, I thought the radiotherapy would shrink it. Both of my parents have been extremely positive and in amazing spirits – we are all praying for a miracle, as we know the treatments have now come to an end.
Today, I am at work and have been in tears the whole day, luckily no one can see me where I am sat. I will do anything for my dad, he is a fighter and he is a living angel who’s time has not come. I have been so heartbroken but earlier this afternoon I came across your website, I read Steve’s story and it has suddenly given me new hope. Do you have any contact details for him or can you please point us in the right direction? I want my dad to have the exact same treatment Steve has had, please please help. I am willing to do anything.
Sorry to have taken so long to reply, I have been busy at work but that’s no excuse. Firstly I want to say Thank You for your email, it was a surprise and really made me feel good, it is an incredibly good thought to know people care and are thinking of you.
I am extremely sorry to hear that the Mifepristone did not work and that more tumours have shown up, I pray every single night for Barbara and you, along with all of the others on the forum. I have a list of everyones names at home as I sometimes take them to church with me. Just because I have not written on the forum for a long time, I still read everyone else’s words every day and I forward them on to my mum who prints them out for my dad.
I wrote to Pete who lives over here in the UK and he and my father seem to be in a very similar position. We were in touch but then there was no further news either side so we haven’t written in a few weeks. I also wrote seperately to a couple of others. Though I am worried that everyone will have forgotten about my dad now because I haven’t written to the whole forum in so long, I want him to be in everyone’s prayers too.
I want to give an update as to what’s been going on with my dad…
After my dad was operated on for 8 hours and they couldn’t do anything (because the already large tumour had spread over his heart, lung and up his aorta) except take a small wedge, he had to wait for his body to heal before he could start chemo again.
In my opinion (I know that’s easy to say) I think he should have had radiotherapy & chemo combined before the operation. About a week after the op he continued to have Gemcitabin and Cisplatine (the same as he had before the op), he then had to wait a few weeks before he started radical xrt. During this time I thought that I wanted my dad to have combined chemo and xrt – the strongest thing possible seeing as the tumour wasn’t reacting to anything else. I contacted Dr. Loehrer to get advise on what chemo he thought would be best to do this, I had done so much research reading all of the essays and charts on the web (through thymic.org) and really thought I had sussed out what would be suitable. I wanted my dad to try the etoposide or a couple of the others with the Cisplatine. Dr Loehrer phoned my dad and spoke to him, which was very comforting (talking to someone who actually knows about this type of cancer) and who called him promptly rather than waiting around and charging a massive consultation fee. Dr. Loehrer gave some suggestions but wasn’t keen as radical xrt is so strong, possibly too strong to have alongside chemo(?)
Dad had a week before his 6 weeks of xrt was to begin, we went to France and saw a specialist over there, he said that it would be routine to give my dad chemo and xrt combined over there AND to operate afterwards if possible. We were going to book dad in there but after talking with his specialist back in London we decided against it – the specialist said that the radical xrt was far too strong to combine with chemo and that it would kill my dad. I don’t know if we did the right thing by deciding to stick to just the xrt, he and the french specialist contradicted each other. We didn’t know which way to turn, we were stuck in the middle – bearing in mind, it had now been 5 whole weeks since my dad had’ had any treatment at all (his specialist said all of the Gemcitabin had to be out of his system before xrt started otherwise it causes toxicity in the lungs, Dr. Loehrer said this too). We were worried so badly about how much the tumour may of been growing in this time.
I tried to contact Dr. Harper who wrote the studies for Etoposide, he said my dad needed to be referred to him and then he would see him, though now my dad has started the xrt (he is 2.5 weeks in) we thought it pointless, we will ask to be referred to him after the xrt treatment is finished.
Dad’s voice had gone completely but it is back now, he said he can’t stop coughing (does anyone know what it is that needs coughing up? Is it mucus or part of the tumour??). His appetite is down which is sad as he loves his food. But he does still manage to eat as much as me. He has dizzy spells sometimes. I presume this is where the tumour is pressing on the aorta which takes blood to the brain, it’s also pressing on whatever makes us hungry. As dad is such a fitness fanatic he challenged me and my two brothers to a game of badminton in the garden, he was amazing, however the next day I couldn’t move as my muscles were aching so much – poor dad was aching loads too, I thought he shouldn’t have been doing that kind of exercise, but he was adament that he wanted to loosed up his muscles.
So at present, dad has a few more weeks of xrt to go, I pray so much, so do my mum and dad. I think God has his own agenda with my dad… we’ll see. My mum is being incredibly strong, she loves reading all of the emails from the forum, she feels part of it even though she doesn’t post on it. It has been a huge support to her and wonderful help and knowledge for all of us. My two brothers are also staying strong, they both got married over the past 3 years and I think they are lucky they have thier own family now to build (not that it makes it any less painful for them), however should anything happen my main concern is my mum. Also I can’t stress enough how much I want my dad to be here to walk me up the aisle when my time comes, I am his princess and I have never adored anyone so much in my life. But I don’t want to go down that road anyway – dad is like superman, nothing beats him…. I just like to stay focused on positive energy when I think of him and when i’m with him.
Sometimes at night when I am thinking, I remember how awful it was after the operation, how drugged up dad was but he could still talk 100% coherently to me, how in pain he was and all of the tubes and things coming out of him. He was mostly slient and staring into space. He looked like a little lamb that had been injured and I wanted to pick him up and cuddle him. It was heartbreaking seeing him like that and then for my mum to have to tell him that the operation had been totally unsuccessful and that it had spread. Then I remember walking into the hospital the next day, walking into his ward and there he was stood up, fully dressed beautifully, face shaved, reading a magazine. He looked up and smiled at me and i nearly collapsed, I ran to him and kissed his cheeks, he said ‘alright Nat?’….
That moment, seeing him – he looked like the most beautiful angel, he looked well – and it was only 2 days after his op. We went and sat in the hospital garden. It was breathtaking when I walked into that ward and there he was stood up. I don’t really know what I’m getting at here. just getting it off my chest I suppose. That experience made me feel so positive and I knew then just how strong my dad is and what a fighter he is, he won’t take this lying down (is that the saying?!). His courage and strength moves me so much, it leaves me with such a feeling inside.
I know that you and the others understand exactly what I mean. I think you are amazing Alan, if I am honest with you, I don’t know what kind of state I’d be in if it hadn’t been for discovering thymic.org. Talking with you guys, listening and reading the research you have all provided has been the biggest help, it is a real blessing that I found the site and then all of you.
I will continue to pray for all of us, my thoughts are with everyone. Please pray for us.
If you could post this on the forum I would be very grateful.
Love and hugs, Natalie xxx