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EMandM

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Everything posted by EMandM

  1. Hi Kelvin, I was diagnosed December 2021 and underwent 4 rounds of chemo (starting with Cisplatin and pemetrexed) alongside 32 rounds of radio over 6 weeks. Interim results suggest things are definitely shrinking! But I have had a number of chest infections along the way… I have 2 small children, who are constantly bringing germs into the house (can’t say they never give me anything 😂 !?) Some were viral, which just involved waiting it out, others were bacterial, for which I was given a whole host of antibiotics (mostly oral, but once IV). While a bit of a pain, it’s basically been ok. Also-I just wanted to say… I noticed a while ago you asked whether a cough going away was a good sign. While it almost certainly is, don’t be tempted to think the opposite (that the cough continuing or worsening is bad sign). I didn’t have any lung symptoms when diagnosed, but I developed a horrible cough with every round of chemo. Plus radio to the chest also causes an inflammatory response, so can also cause cough. So just wanted to offer a bit of reassurance there. I hope your mum recovers from her infection soon! Gini x
  2. Hi Justin, Just seen on another thread that you have a scan this week. Sending lots of positive shrinkage vibes your way! Hope it goes well. I’m finally starting SABR to my shoulder met this week. Praying and hoping it works! Gini x
  3. Hi Justin, As my doctor friend said when I was first diagnosed, the one thing we know for sure is that the NHS wouldn’t frivolously spend money and resources on something they didn’t believe would work (which I actually found weirdly reassuring!) All I can say is, step away from the internet. I am totally guilty of doing the same thing (googling to try to find reassurance… but then just spiralling because of the stats). But as others have said, the stats are out of date and don’t take into account your individual circumstances. Easier said than done, but try to put them out of your mind. All we can do is stay hopeful and take each day as it comes… one step at a time. Where there is treatment, there is always hope! Xx
  4. Oh Justin, I’m so glad your scan was so positive. That’s so fantastic! There’s a tonne of research into Gamma knife that shows it is incredibly successful… so I think you’re in really good hands. Stay positive and celebrate the good news!! All the best, Gini x
  5. Hi Justin, I’m so sorry to hear you’re going through this. I have a young family, so know what you mean about the crushing weight of it all. But we have to stay as positive as we can. I know that feels next to impossible when there is so much uncertainty… but once you have your treatment plan, hopefully that will help! I’m a member of several Fb groups for my type of cancer, and I follow a number of people on Instagram in similar positions. Many have had brain mets and have dealt with them in a number of different ways. So while there’s treatment available, there is always hope! A cancer diagnosis is seriously tough, psychologically speaking. My hospital (Guys & St Thomas) offered me psychological support alongside my treatment-and I wholeheartedly recommend it!! Just being able to talk about it all has been really helpful in terms of processing things. Is it worth talking to your oncologist to see if that’s something your hospital offers? If not, calling Macmillan is an option-I found talking to them really helpful, and pretty cathartic. It’s so important to look after your mental well-being, as well as your physical!! Sending you lots of positive vibes and virtual hugs. Gini x
  6. So glad you got to go!! That’s so great!! I started my radio on Monday… 2 down; 30 to go! I was planning to more-or-less hide away while I did it, but you’ve inspired me to make some plans with friends to look forward to along the way. Xx
  7. Doesn’t sound silly at all!! How are you going with it all? Hoping you’re able to make it to your friends birthday ok. Sorry… only just seen your scan results. That’s such fantastic news! I hope they all continue to shrink! Xx
  8. Hi Justin, So I think PD-L1 is a protein that can be found on some cancer cells. The presence of PD-L1 basically tricks your immune system into thinking the cell is harmless, so your immune system ignores it rather than attacking it. If you have a high level of PD-L1, immunotherapy can be used… which I think essentially works by allowing your immune system to see through the PD-L1, and recognize the cells as harmful… so your body will start to fight the cancer cells. I think. If you are PD-L1 negative (like me), it means you have low (or no) levels of the protein on your cells… so immunotherapy may be less helpful. But there are studies that show immunotherapy can still help despite this (like this one: https://www.frontiersin.org/articles/10.3389/fonc.2021.657545/full). So they may still use immunotherapy in your treatment. I’m afraid I don’t really understand the genetic mutations either, so would also be keen to hear more about what they all mean! I hope that makes sense! Gini
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