EMandM
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Posts posted by EMandM
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Fabulous news! 🎉
- Karen_L, Justin1970 and LouT
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12 hours ago, Chuck K said:
Hi Gini
I recently got the same results happy for you. Now celebrate
That’s fabulous news. Congratulations to you too!
- LouT and Justin1970
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Hi all,
I realised I haven’t been online in a while, so wanted to update everyone on my situation. I got my scan results back today… these were the big ones after 4 rounds of platinum chemo (cisplatin and then carbo) + alimta/pemetrexed, 32 rounds of radio to my lung and lymph nodes and 3 lots of high dose SBRT to my shoulder.
I’ve been really worried about these scan results, as I’ve been in A LOT of pain in my ribs for the last month. Plus an MRI a few weeks back showed an abnormality in my 6th rib, so I was fully expecting bad news today. But no!! Quite the opposite, in fact. My CT and PET scan showed no sign of active cancer! The report said “complete metabolic response”. Amazing… I’m totally blown away! It feels totally miraculous. 🙏🙏
It actually turns out that the rib pain is due to a broken rib. I’ve basically been coughing a lot over the last couple of months (partly due to radio, and partly the chemo affecting my immune system, so I keep getting viruses from my son who is at nursery)... anyway, between the cough and a potentially weakened rib cage from radio, I’ve cracked a rib. No wonder I’m in pain. But I’ll take it over a new metastasis any day!!
Now I know that things can change really quickly, and my type of cancer loves to metastasise, so the chances are that it will rear its head back up again at some point… But right now this is just such good news. So I’ll take it!!! This diagnosis has made it very clear what matters and what doesn’t, so I will try to continue to live my life day by day in the rebellious hope that I will continue to defy the odds, and get on with doing the things I love… namely, making memories with my family and friends, and generally LIVING my life!
Gini Xx
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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
- LouT, Justin1970 and Kelvin4426
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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
- RJN, Izzy and Justin1970
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Hi Lily,
So sorry you’re in this position too. I was diagnosed Stage 4 last December - I’m also a mum (I have a 1 and 5 year old), otherwise healthy never smoker. It completely knocked me sideways… it was the last thing I was expecting. I was just so sad at the beginning, and felt so hopeless. The thing that has helped me is to stop trying to second guess what will happen next. Instead, I have learned to (mostly) live in the moment, be present for my kids and take it one day at a time (sometimes one minute at a time). That’s definitely helped my mental health!! I’m also seeing a Psychologist who specialises in oncology… and she has also really helped me! (My cancer center offered this alongside treatment, so might be something worth asking your oncologist about).
Like you, I was also dreading chemo, but it was nothing like what I was expecting from what I’d seen on TV etc… While it is tough, it is bearable. I did 4 rounds and it has massively reduced my tumours, so I’m very thankful for that! So please try not to worry about it. Its also very possible that you won’t need it. Given your demographics, it’s quite likely that you have an EGFR (or other) mutation that has targeted treatment options. It also depends on what your PDL1 status comes back as. There are so many treatments available for lung cancer these days, there are many reasons to have hope and be positive… so please hang on to that!
Take care,
Gini x
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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
- LouT, Lisa Haines, catlady91 and 3 others
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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
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5 hours ago, RJN said:
Thanks for checking in, Justin! Yes, I am still doing well, and the party was just what was needed - very glam and great to see friends from far afield. Now I am ready for whatever the rest of the treatment course has in store for me (14 down 21 to go).
Any news from your side ?
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
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On 1/14/2022 at 1:15 PM, RJN said:
Thank you both! I know it sounds silly, but my best friend’s 50th is coming up in two weeks, with people coming in from all over the world. After the past two years of lockdowns and cancer treatments I really, really want to be in decent form. I know there is nothing I can do in particular, but from what you are saying, I could be fortunate and make it ❤️❤️❤️🤞🤞🤞
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
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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
Mri scan
in MEMBER UPDATES
Posted
Hi Justin, that was my chemo combo. I totally get it. I kept a log of my symptoms after each cycle, because they followed the same pattern each time… and it kind of reassured me to read them back when I was going through it, so I knew I’d be out of it again soon (if that makes sense). I had gastro/tummy issues, fatigue, nose bleeds, but the think that bothered me most was a generally crappy feeling. It is difficult to explain… but I just felt like my brain and body just didn’t work properly. I couldn’t think/process much… and I also felt really down. On about Day 6 I felt my worst mood-wise. But by Day 12 I was back to normal again.
It was really tough, but also really effective at killing the cancer cells. So hang on in there!!
Gini x