Hello all!
Hope everyone is keeping well during these scary times xx
It's been a little while since I've been on here as there weren't really any new developments for a while, but just thought I'd do a little update on my dad as we have a bit more information about his cancer post-op and he's started his immunotherapy.
Unfortunately, after running all the tests on my dad's kidney, they found out that he has the most aggressive form of renal cancer. Not quite sure what scales they use, but he scored the worst possible mark for both of them, and without treatment, they say that the cancer has a very very high chance of returning within a year. At his last scan, his lung nodules had also grown, but not sure by how much as he asked not to find out.
This kind of set us all back a wee bit! My dad had basically become asymptomatic again and was putting on weight - he was only a stone away from being back to normal - his appetite came back, his fatigue was still there a bit but it had subsided massively, and I think the only thing that was giving him any proper trouble was his surgery scar which is still a little uncomfy, in addition to feeling generally weaker than he did before he became symptomatic. I actually think it knocked my dad more than the diagnosis did. He said that when he was in the hospital the first time, he wasn't expecting good news, so while it was a blow, he had prepared himself for it. Prior to this appointment, he was feeling so much better and we were told that after the main cancer had gone, there was a chance that the mets would stop growing/shrink, so even though we knew that there was still a reasonable chance that the cancer had continued to grow, we were all very hopeful and this was a bit of a shock!
Trying to stay positive though! On the bright side, I've heard that the more aggressive cancers often respond better to treatment, and he's started an immunotherapy trial of Nivolumab and Ipilimumab, though side effects have been fairly grim. While he felt okay for the first few days after treatment, he suddenly developed quite severe gastrointestinal troubles. All the weight that he put back on over the past few months disappeared in just two weeks as he literally hasn't been able to keep anything down, including liquids, plus he's been very bloated and lethargic too. He has been a lot better over the past couple of days though and is eating reasonably well again, we're just worried as the next dose is next week (I think), and it's unlikely he's going to regain any significant amount of weight before then, especially if he's set to lose more.
Coronavirus has also had a bit of an impact on the treatment. As the drugs directly target your immune system and batter you about a bit, they've decided to only give my dad one of the drugs (not sure which) but in a larger quantity at his next session so that if he catches the virus, he won't be as compromised. I do understand why they've done it, things are so scary at the moment and even the healthiest of people seem to really suffer if they catch corona, but I've heard that the combination of the two has been really effective for some people, so I'm really scared that having only the one won't work/won't work as well. But I guess that as long as it works I'm not too fussy! They say that if they need to, post-pandemic, they'll put him back on both drugs again, but I've also heard that getting back on immunotherapy once you come off it is difficult as it's so expensive, so quite anxious about that! I was also hoping that he would join the Macmillan group at his new hospital (Mt. Vernon) as I don't think the idea of writing things down like this appeals to him, but I think talking to people would have been really useful for him. He seemed to feel a bit better after talking to a fellow patient when he was having his first dose, and I think he was up for it as he's definitely become a bit more emotional at times now, so a little concerned about the mental health side of things too, but overall things appear to be getting better now that the side effects have worn off a bit.
The scan which will tell us if things have improved is around May, so just have to keep all fingers and toes crossed until then I think :)
I hope everyone is keeping safe and well, and hoping that everyone can still get their treatment too x
Jess xx
(Also, a bit of a side note, but essentially struggling a little with the fact that my aunt may have cancer too but is completely refusing to comply with doctors to get a diagnosis. She was diagnosed with a blood clot before Christmas and accepted anticoagulants but did not stay in hospital overnight as the doctors recommended. However, she had undiagnosed anaemia, and prescribing her these drugs without a blood test was very dangerous. My mum made her stay at our house on Christmas Eve as we were all quite worried, and thank god she did as she collapsed twice that night and we had to rush her to A&E. She stayed in for eight days and they did a whole bunch of tests and scans, which, at the time, she told us came back clear. My mum only found out recently that she was lying, and two consultants told her that something came up that looked like cancer but they need her to have some kind of diagnostic procedure done, which she had booked, but she cancelled it and told us that the hospital cancelled it because of coronavirus. She doesn't know that I know this, she told my mum and asked her not to tell me, but my dad did because he felt I ought to know (whether it was right of him or not, I think he's understandably feeling a bit emotional around anything cancer-related) and he thinks I might be able to persuade her somehow as we're very close. I get that this might be coming from a place of fear for her, I really can't imagine going to hospital knowing that I'll probably be diagnosed with cancer, but I was just wondering if anyone has any advice on how this might best be approached in terms of trying to persuade her to get diagnosed so she can get treatment asap? I'm really sorry if this isn't the best place to write this, I'm not sure where else to put it and not sure where exactly the cancer might be if it is cancer, so possibly not kidney related, but I'd be really grateful if anyone might have experience with something similar. I don't want to guilt trip her as I think she must be feeling horrible enough as is, but I have no idea how to go about this and I can't quite believe this might be happening again.)
P.P.S. Apologies for the VERY long essay! :')
