Good news and bad news, dealing with this shit you only want good news but it's not always the case.

Great to hear some of its stable but lucky you had a scan and found the other shit that seems active. Catch shit early makes a difference IMO.

Treatment has come a long way with all the different Immunothery they have now. Looks like they have a plan for you which is awesome. It's amazing how many different types there are.

Hopefully once you get started and follow up scans show it working and no progression or even shrinkage. Fingers crossed mate.

I'm not familiar with your type of Immunotherapy but from my experience it's going to be WAY better than Chemo. When I had Chemo I was wondering what was worse - the treatment or the disease. I was sick to the point of nearly stopping. Family was the only thing that kept me going much like most people, I guess.

I've been on Immunotherpy - Avelumab since mid-January. Every second Tuesday go in for 5 to 5 3/4 hours of treatment/infusion.

It's been stable on a couple of scans but had a PET scan two weeks ago and like I said - good news is often delivered with bad.

Apparently its now on some Lymph nodes which isn't great. Oncologist says they can't offer any radiation because I've had so much in that area the radiation DR says it would at best cause major problems or be fatal. 

My Oncologist is absolutely amazed by how I'm going and that I'm still here to be honest. I told her initially that this shit wasn't going to get me, but she can be quite blunt and doesn't really sugar coat it.

You just have to stay strong and with a good Oncologist in your corner you/we can smash this shit. 

As fucked up as it is dealing with shit like this I always say there is always/usually someone worse off.  as bad as my news was last week as I'm standing waiting to see a counter nurse there was an old mate standing there with no nose and only one ear.

Sorry for the ramble but stay strong Blue and hopefully the side effects from treatment are manageable.

As said before - we are here for a good time not a long time. Enjoy ya shit, whatever you love doing do it.

they did want to remove the gull bladder before treatment but the doctor after looking at the latest CT scan said the risk was too high

said there was a chance I would bleed to death on the operation table not being able to clamp veins and starving the liver of blood

know what you mean first time in a treatment ward yesterday and there were lots of patients there some of them were 1/4 of my age at least I've been around the block several times and lived a full life

any way Bob good luck with your treatment's 

   We have my Father inlaw with Stage 4, in numerous parts of body,  has had all the chemo & radiation allowed. Still in pain but here after over 2 & half years, but my mother inlaw,  was riddled in Stage 4 Cancer and sadly past late last year.  

   Stay strong and i wish you the best.🙏🙏

Good to hear you had your first treatment and it went well, awesome. Hopefully you don't have any side effects and if you do, they are manageable. I tell people what doesn't kill you makes you stronger.

Blue, I definitely wasn't trying to take anything away about the severity of your cancer, doesn't sound minor, when I commented, I just thought I'd let you know my experience with Immunotherapy. You're dealing with it (unfortunately), and I don't have to tell you how serious it is, and I wish you nothing but the best with your treatment and hopefully it holds it from progression or starts to shrink - even better.

Yeah, I agree it's an eye opener when you first go to see how many people going for treatment, I try to be low key, but no matter how fucked up/down I feel I always try to appear upbeat and friendly (if that makes any sense). I've had one nurse even comment about how it's good to see me on her list for treatment because of I guess some patients are like misery guts, I said it's not your fault I'm here. 

I'm sure by now much like my oncologist the nurses realise I'm a bit different. When I first went into the Cancer therapy centre, I remember my Oncologist bought in two junior registrars and a couple of student doctors to meet this freak with these rare tumours. I think they expected me to be in a wheelchair or in a bed. The first thing one of them said was they wanted to see the guy with the massive tumour, I said back it up buddy when the fuck did it become massive? It was big or large a couple days ago, obviously 125mm x 85mm is massive in his books. I didn't even know it was there until a few days prior. They started talking treatment options and life expectancy, maybe six months with no treatment at best maybe twelve months with treatment. That's not going to happen - I'm not going anywhere, I didn't put this much effort in to go early. I said to one young Asian Junior DR if it was a person causing me this much grief, I'd be belting the fuck out of him in the corner and only one of us would be walking out of here, I'm sure he scribbled something in his folder - crazy as well. LOL

I've got treatment tomorrow so five and half hours ish - great - not, but it is what it is with no options and other than some lymph nodes that apparently want some of the action now, the treatment seems to be keeping the main tumours stable ATM. My main side effects are pins and needles in toes, feet and lower legs and cramping in my hands/fingers and feeling a bit out of it - zonked if that makes any sense. If it's keeping me alive, small price to pay I'm thinking ATM.

 On a side note, the first time they administered this Immunotherapy ( Jan 2021) I had an anaphylactic reaction and went into cardiac arrest that's why the only option back then was Chemo which it responded to and after two rounds of radiation all looking as well as can be but a few months later the fucker started to grow again. Oncologist said she had run out of treatment options but because I was going pretty well whoever she answers to agreed to try the Immunothery again with a slow infusion some premeds and steroids before and during treatment ( I thought I'd be bouncing out of my skin ,you know looking at v rods and wanting to go to the gym type of steroids, no these steroids make you put on weight and hungry all the time Doh, LOL), other than the side effects they agree I'm tolerating it well, but there aren't any options so....... 

Again, a bit of a ramble oh well. That's the short story believe me.

This time last year in hospital getting my tonsils out, yeah can you believe it a sixty-one year old guy in for tonsils. Yep cancer thought great idea to go to tonsils. Operating staff reading allergic to Avelumab had no idea what it was and never even heard of the type of cancer Merkel cell carcinoma. 

Good luck with the rest of your treatment Blue, stay strong mate. Gotta show them just because we got some age doesn't mean we are going to lay down to this shit. Like most people, I didn't see it coming but now it's here, it knows I am not going without a fight.

Hey Steamer - Thanks for you well wishes for Blue and me. Sorry to hear about your in-laws - cancer is fucked, I wouldn't wish it on anyone. Tell father-in-law stay strong, I know it's hard when they've got some age but..... 

I was only wondering the other day how you are going with your treatment.

You have to be strong and hopefully this treatment works for you.

I fully understand and at times struggle with the side effects of my treatment myself.

I ignorantly thought I would kinda get (tough it out type of shit) used to it over each treatment but that's not the case because it's gotten worse (not something you want to hear I'm guessing). I asked my Oncologist if it has some sort of accumulative type of effect, she just says I'm tolerating it well and starts talking about treatment options next year.

She thinks more Chemo is needed.

Like Hilly said there are two options and I for one can't imagine going without some sort of a fight.

Stay strong, enjoy yourself doing what you love with people that matter to you.

Bigbob

not too much has changed a lot of sleeping, and I lost a bit of power in my legs

sad day tomorrow trike going to a new home

Good to hear that it sounds like you are tolerating the treatment well, at least no crazy reactions.

Yeah, I know what you are saying about lots of sleeping and I think I mentioned it gives me pins and needles/ burning sort of feeling in my legs and best explained as a wobbly feeling in legs. 

Oncologist says I'm tolerating it well but suggested a new drug that might help, she says it is a nerve blocker.  

Number one side effect is suicidal thoughts and depression. WTF. I aint trying that shit - like I always say I try to be positive.

Scans early December show the main tumours appear stable which is great, but now there are some lymph nodes full of uptake which means they are full of the shit. Not what I wanted to hear. Doc says I've done really well and isn't sure what our options are ATM.

She has given me a couple of weeks off treatment and said enjoy Christmas, we'll resume treatment early Jan.

Surgery isn't an option or radiation, so more scans late Jan to see how fast it is going to spread.

Dr never sugar coats it but when she says it's all about giving me a bit of extra time, I think she 

obviously knew we would be here one day. Not happy about it - but it is what it is.

I'm not giving up by a long shot and still try to be positive every day. And I try not to stress about shit I can't change.

Seems to have worked so far.

Probably is a sad day moving your trike on but only you know what's best for you. I have had some mates recently ask why I haven't started doing the same. But to me, seeing shit that used to be really important to me gone - well I just don't want to go there yet.

Stay positive and have a great Christmas Blue.

Bob