All right, I better finish and then close my door. Oops, better put that down so you can't see it. Oh, I forgot to close the door, which is what I was doing. Okay. Oh, my poor hair. this on airplane mode wait for the timer to start So this is the topic I get asked about quite frequently, and I thought it warranted its own podcast episode like I've done with the radiation and the chemo, and that is the immunotherapy, in particular Keytruda and Pembroke's. So this is the one I've had the most side effects of. with knowingly uh usually the oncologists trade and blame the side effects on each other that's a radiation problem that's a chemo problem that's you know problem it's very clear that what i've had uh since I have finished treatment is immuno related. And I have made a decision in relation to whether I'm going to continue it or not, which I'll get to later. But I struggled to find, again, just anyone really talking about treatment and what their side effects are and what went good what didn't go good what they had done exactly and I don't know why that transparency is not there I am not pro-western I'm not pro-integrative I'm not you know pro-vax anti-vax it's not about any of that it's simply going through the experience that I've had and the thought processes I'm now going through because I've had more time, I suppose, to process what has happened nearly twelve months ago. So I, again, just had the sheets of paper that I was... Handed. Katrina has this as well. So it's like about ten K bag. So it's not treat. It's not treat. It's not cheap and it's not available for all different types of cancers. So the research with the cancer that I had was limited just because I think they've only started using it for the past few years so it's relatively new and when i would try to do independent research there just wasn't much out there and with the different scenarios that i was facing it just it didn't exist it was pretty well the the one uh case study of you know finishing two years worth of pembros which is about seventeen um um infusions and it was minimal you know uh scenarios with that so the chance of reoccurrence and you know the people that didn't have reoccurrence what type of um response did they have to treatment and there was so many just different length that didn't exist. So I'll go through the side effects that were handed to me in the shade, what I experienced and how I come to my decision as to whether I continue with, with primrose or not. So this was for advanced cancer, which It's difficult to still process that it was advanced. It's a little bit scary actually. So I would have this at the same time I had chemotherapy. So a day where I had chemo and immuno was a very long day. The bag itself, I know it takes about half an hour. It's about five hundred mils. And initially it was very difficult. Three weeks, and then I got pushed out to six weeks, but I didn't get too high in due to this because of the wheels. It's off with effects. And as I said, the treatment is repeated every twenty-one days, or it can be repeated at forty-two days at a higher dose. So I had issues. just before the higher dose so um yeah so the wheels were kind of falling off before i hit that stronger dose and it's uh through a cannula again so um more needles but um i'll go through just the um the the sheet so you have to get bloods done I don't know whether I mentioned this with chemotherapy but you have to get bloods done before you have treatment to make sure that your levels are deemed safe and good enough to get treatment I'm not saying your bloods are perfect it's they just have to be deemed good enough to get treatment. So that doesn't mean, yeah, as I said, it doesn't mean that they're perfect. They could be kind of still not good. But as long as they're within the certain ranges, you're deemed to be able to have treatment. So I don't recall having any issues with any of my blood from a treatment perspective. I think the liver might have been a bit closed at one stage. And then when the side effects started hitting with immunotherapy, that threw another can of worms as well. The bags generally aren't made either until you're physically sitting in the chair and you've had sign-off for treatment for that day. I generally see mine in college. I usually have radiation before or after treatment. Sorry, radiation either before or after. chemo and immunologist who was the same person uh before treatment uh where she would assess your bloods make sure you know see how you're going and then you would in my case i would go downstairs i'd get the sign off so then they would order the drugs from the pharmacy upstairs and probably spend like twenty minutes or so with you getting you to answer a pile of questions So you would have done something similar and then I would process probably more in depth with the nurses in the day treatment center. So the side effects here, there's quite a few. As I said, I definitely, this is where my side effects probably more kicked in than the other treatment. So, you know, there's a warning here that says cancer treatments can cause damage to normal cells in your body, which can cause side effects. Everybody gets different side effects. Immunotherapy may cause serious immune reactions against your own body. These are called immune-related adverse events and they can occur during treatment or after. Immunotherapy can affect many parts of your body, some severe and or life-threatening conditions, some also mild. I'll go into... I probably won't go into the rest of that page. I'll go into that on the next page. But, yeah, so that's how I start page two. So heart problems, so chest pain, shortness of breath, swelling of ankles, abnormal heartbeat. My blood pressure was really high throughout this process. For my first brachy it was like one-ninety-something over something i'm like i'm with the bottom number is it so the top number was really high um so and last i checked it was back down to to where it's meant to be ended up buying a blood pressure monitor because my blood pressure was very abnormal i kept saying it was situational and basically when the treatment had finished in particular brachy my blood pressure was a lot better and i didn't want to go on blood pressure tablets because i was being stubborn So thankfully, I don't recall having heart problems, but my blood pressure was very high. Bowel and stomach inflammation. So yes, severe colitis. This is where the steroid use came in. So I was on steroids with the chemotherapy that I had, which was Dex. But also with this, I had to go to a different steroid to settle everything down. So I started on a seventy five milligram of steroid. I was on that for a few weeks. That was where I was not sleeping. I was wired but tired. It was an absolutely horrible, horrible night. Very similar to IBS, I understand. So if you have IBS, I feel for you because what I had with colitis, I was basically house ridden. I couldn't leave the house. It was quite bad. So that was your bowel, a lot of mucus in your blood. And I think I had that. Your bowel motions are completely different. Sometimes you're constipated, sometimes you're not. bloating cramping a pain or tenderness uh the pain was very very bad it was all down my left hand side um sharp jumping pains kind of like every few minutes for for days um so I was seeing a herbalist at the time and I didn't think, because I wasn't processing things because I was so tired, had I reached out to her, some of those symptoms, well, in relation to the digestion side of things and the inflammation of the stomach and the bowel, I probably could have eased some of them. So I did take some supplements with her, which I am still on, but it was basically like ripping my... digestive tract, I suppose, like my bowels and my intestines and stuff. So it absolutely mutilated it. So I was on steroids for around two, two and a half months. No, probably actually closer to two and a half, three months, I think it all started around April. So That was the worst. I don't recall kind of having any telltale signs that it was leading to that. My oncologist was away and I think they were actually quite slow in... working out what it was. I feel if my oncologist said this would have been caught and started a little bit earlier. But yes, it was absolutely horrible. I don't think I've ever gone through anything like that before. And I really don't want to have to go through anything like that. Again, still trying to repair, I suppose, the whole digestive side of things. So that one, yes. Blood problems was another one. So dizzy, lightheadedness. I don't remember any of that. I didn't have shortness of breath or headaches. I had the faster heartbeat, but I think that was more from the steroids that I was on. But from, yeah, the blood problems, I mean, you kind of get plain bleeding, bruising. I had bruises all over my arm, which was mainly just from all the cannulas that I had. I didn't have fever or shortness of breath or anything like that. So I think on that side of things, that is a no. Liver damage, so I didn't have anything permanent. The liver bloods were a little bit how you're going at some points in time, but... Thankfully, the liver is okay. Muscle and joint problems, I still am quite sore, but I'm putting that down to radiation. I don't think that is an immune response, namely just because I am sore where the radiation was. So muscle and joint problems, I don't think I had specifically from the immunotherapy. Nervous system problems, so yes, I didn't have the headaches or fever or the stiff neck, but all the jerky movements or muscle weakness, but it was like pins and needles. So I still have a pins and needles sensation here. pins and needles in hands and feet generally. I also was getting moments of thinking I had like a cobweb or hair on me, usually kind of my arms and my legs, and there was nothing. It was just that... like that sensation that there was something there. So that's another nerve sensation that I had. Thankfully that's gone and, you know, I don't have as much hair falling out anymore, but I don't have, as I'm saying that, I've just pulled a hair from my arm then. But, yeah, that sensation here is still here. The pins and needles is not as bad. But, yeah, so it was more pins and needles that I had from the immuno because that was attacking my nervous system. eye problems thankfully i don't recall having they haven't changed color they're not dry they're not sensitive to light not itchy swollen uh so i didn't have any of that which is great some of this stuff can still happen as well so just yeah i'm not currently in treatment doesn't mean this isn't going to happen Hormone problems. So this can probably be put down to the treatment in general, but this is also mentioned on the immunotherapy side. So being hot or cold more easily. One moment I'm hot, next moment I'm cold. Weight changes. So my weight has fluctuated a lot. And, you know, because I have damage to my thyroid, that is not helping things either. So the weight and feeling just, ugh, and... Not being able to diet or exercise your way out of it has been incredibly frustrating. A deepened voice, I reckon my voice has changed. I don't know whether it's from treatment or not. It feels a lot more croaky than what it was. I'm looking at ways to try to fix that naturally. Nausea would be the touch word. Did not vomit once in treatment. I'm actually quite proud of myself for that. Blood sugar levels were fine. Pain in stomach area, which, yes, I had, but I think it was more from the colitis. Difficulty sleeping. Sleeping is still not crash hot. Changes in mood or behaviour. That's a side effect of basically everything. So that would definitely be there. And just the tiredness, like very, very lethargic still. Not as bad as what I was, but if I have a busy day, which... To most people it wouldn't be a busy day, but what would be deemed a busy day to me usually knocks me on my arse pretty early as well. So I kind of do the school pick-up and then I'm in my pyjamas afterwards like I'm exhausted and then still not sleeping properly. So lung problems, the coughing. That was something they were really concerned with. Do you have a cough? Do you have a cough? So I didn't really have, again, shortness of breath or difficulty breathing, chest pain or a cough, which was really good. So that was under lung problems. Kidney damage. I think the kidneys might have been a bit how you're going at one stage as well, but... I didn't really have swelling either. I said I made the mistake of not elevating my legs for the first day of treatment and I learnt my lesson for that. So it was swollen purely because I had like five litres pumped into me, five or six litres I think it was. But, yeah, other than that, it was okay. Lots of appetite. I definitely haven't been eating a lot, which... You need food for fuel. But there was definitely times where I didn't want to eat anything more so now than probably going through treatment. And that not eating a lot but then having the weight not move either is incredibly frustrating. But... I'm sure I'm heading in the right direction now. A skin rash, I was very lucky, kind of broke out here a few times again on my face, but I didn't have any other rashes or blisters or peeling or anything like that, which was very, very lucky, especially with radiation because it was expected. Thyroid problems, yes. So this one has also hit me and... I'm told it is not repairable. I am very mindful of the words I tell myself and I'm telling myself it will be repairable. This is what probably broke me because my thyroid was completely healthy until the immunotherapy started attacking and attacks healthy organs. And for me, it attacked my thyroid. So I am on thyroxine. So I've done a few different posts on my thyroid as to where my bloods sit at. So you can go have a look at my socials. For that, that is where the fatigue and the low energy comes in, the depression, the unexplained weight gain, intolerance to temperatures, fatigue and aching muscles, dry core skin. Thankfully, I didn't really have puffy face, hair loss, constipation, problems with concentration, changes in your periods. Well, that's all dead because of the radiation, so I didn't have that. So I was going between underactive and overactive. So that came, the hot or cold is the excessive sweating, the difficulty sleeping, the anxiety, the nervousness, getting agitated, diarrhea. Yeah, so I've literally gone between them for the past few months. So the level... are coming down, which is good. So the TS-III and the TS-IV are now within normal time. But I'm on a hundred milligrams of thyroxine as well, micrograms, something like that. So heading in the right direction, I am absolutely determined to come off these meds and heal my thyroid naturally, which I'm told I'm stupid, but... um gotta have a goal right and you know if anyone knows me a little bit over ambitious sometimes so cancer stage so cancer so i'll um yes so thyroid yep completely healthy till it wasn't So, yeah, so working on that now. Nausea and vomiting, I haven't felt that for a little bit. I did feel a bit funny the other week actually, but very, very lucky again that I did have no vomiting. I don't know how I didn't, but I did not. A couple of close moments, but I did not. And that's where I was talking about before where using food and, you know, now... During treatment, I was trying to be so specific with what I was eating. And in the end, you're craving those carbs. You are craving those dry, safe foods. I ate what I could during treatment, so I was still eating and forgave myself for not eating how I wanted to. Now is when I'm looking at changing my diet and getting better with food, but I gave myself permission to just eat whatever I could. which was just a lot of dry, carby foods to put the nausea at bay and have something in your stomach. So if you are going through treatment or you're about to start it or whatever, please don't be hard on yourself if you're not eating the foods that you wanted to eat. I was told to go home and eat whatever I want. Don't even get me started about the topics, the discussions that I've had with the doctors about diet and food and things like that. um but yes now i am raining in the food a lot more than what i was but dry food will probably be your friend uh tiredness and lack of energy fatigue still there i you know it's like your treatment has finished it's expected your post cancer responsibilities return because your treatment has finished but This is just a whole other stage, which I think is harder than going through the treatment itself. It's that recovery side of things. I look forward to the day where it's not. um but yes that is definitely there as well um there is an increased blood clot risk as well i do know somebody locally that had that touch wood i don't have that as far as i'm aware um if you are using other herbal supplements you need to make sure that this is discussed with your oncologist thankfully my chemo immuno-oncologist i'm a herbalist talk to one another, which is really good. I think there's been some firm discussions, but please make sure that you are disclosing to your oncologist anything that you are taking. For example, I could not take curcumin whilst on immunotherapy because they would have clashed. Um, so yeah, you don't kind of want to make yourself unwell because you're taking supplements and not being upfront with your team about that. They were very big on dental. If I was having any issues with dental, I had like dental appointments coming up. Um, so touch wood, my feet, my feet, my goodness, my teeth are fine. I did get them checked the other week. My normal treatment that I get done and get checked every six months. Um, I reckon, um, I was kind of clenching my jaw a lot and I probably did that for like the past eight months. So I think the teeth might have been like slightly warm because I was clenching so much and very sore around the jaw area, but teeth-wise was okay. uh diet again so they usually say reduce or don't have alcohol and smoking and vaping um careful with water i wasn't allowed to swim or go have baths or anything while i was in treatment as well um so yeah so i didn't do that for quite some time um but yes just ask any questions if you if you're not sure What else did we have? Fertility. So some cancer treatments can reduce your fertility. So that's in my case, pregnancy and breastfeeding are my... go into just because i'm not relevant to me but you need to have that discussion if you are pregnant or breastfeeding or you're looking at having children um and it says quitting smoking and then trying to stay active so staying active was incredibly difficult i still have issues or difficulty walking and get very tired or have you know, my knee or my ankle or something will give out or I'll be very sore. So, yeah, staying active. I'm not making a basketball or a squash comeback anytime soon because the strength is not there at all. So I have started walking again, which is good. It's only around the block. It's not far, but definitely taking a while to be able to get active. That's something that I hope to be able to increase. So I am very slowly getting there with that. And I don't think there was really anything else. This was just a separate form that I received. I've signed my life away for on the seventeenth of the twelfth, just before Christmas. Yeah, so... That is it. I suppose for me, so my journey with it. So I was meant to have seventeen and I had seven. And last Monday I officially broke up and declined any further immunotherapy because I was more stressed about what was going to happen next than getting cancer again. um there is no research out there as to what happens if you have seven out of the seventeen or any other amount it's only based on people finishing the full seventeen rounds um i think a lot of those people didn't make it to the end because of the side effects so um I've always said quality over quantity, I suppose. And if I was putting so much energy in being stressed about what was going to be the next side effect that I get, I know someone that had hepatitis and diabetes, like their side effects from it as well. And I wasn't prepared to sacrifice another healthy organ, I suppose, when I'm determined to not get cancer. Again, I know that might sound really, um, naive perhaps, I suppose, but I am very careful with the words that I use. I thank Western Medicine for having the chemo, having the immunotherapy that I had, having the brachy, having the external beam radiation. So I have done those things now, but now it's time for me to look at what other options there are out there to complement the treatment that I have already had. And with the immunotherapy, I just could not do it any more because i was just there was too much stress attached to it for me so um yeah so for the moment i'm still having regular uh pet scans i still have my bloods done so basically nothing has changed in that department for me other than i'm now not receiving immunotherapy i was meant to get my next one tomorrow so that would have taken me to number eight but i've had some really big gaps in between and the studies are very specific and they are based on people having the treatment when it was due so either the three weeks or the six weeks and i've had a couple of twelve week gaps so i said that the studies are just very limited with the information um that is out there so Yeah, I felt quite guilty for not continuing the immunotherapy, which might seem silly, but I did have guilt attached to that. I think at the same time I also felt feel relieved that I don't have to worry about what side effects going to happen next. So that something can still happen. I can, you know, I'm not immune that, you know, there was no pun intended with that, but you know, in twelve months time, there might be another side effect that comes out. But I have now just hit the stage where I'm looking at other methods that are complementing what I've already had. So the hyperbaric chamber is something that I have started. Red light will be something. So I'm just trialling other methods. things not because it's a fad but it's because something has been put out there to complement what cancer survivors have or even patients have gone through and I'm testing them out for myself so um I don't think I have anything else for that. I'm surprised I have not got teary. So, yes, I haven't cried for this, which is – that's a positive. Not surprising anything, but I'm obviously coping with it a lot better. But immunotherapy, yes, that's definitely where my issues – I've started. I do not regret having what I had. You know, it's part of the journey. I just felt like my time was done and I didn't have another ten in me. I really didn't. So I miss my team. I miss going in there. I will hop in there next time, next time I see them, particularly Beck and Tamara. They're all the ones that got stuck with me pretty well. from day one so but yeah so if anyone has any questions about Keytruda immunotherapy please let me know very open book I haven't you know I just I want the information out there so people can make their own informed decisions because the information out there is very slim at least with the cancer that I had. But I think in general, it was very, very thin. So I feel like I'm forgetting some things, but I can't think of what it would be if it was. But yeah, they're the side effects that hit me the most. So it nearly broke me at times as well. But thank you for listening. I think I've got... One more episode, which I'll do on the brachytherapy, but I thought I'd do the immunotherapy because that's where I get asked the most questions from other people looking at starting it or continuing it. So again, open book, please reach out if you have any questions. Thank you for listening or watching. um following my journey and i appreciate you all and yeah enjoy the rest of your day please make sure you get your checks and yeah i'll catch you next episode thanks guys bye all right thanks jim
