Been missing a while

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Gio · #1 Post by **Gio** » Sun May 19, 2019 6:16 pm

Hello one and all, cards behind the bar, but I'm not drinking currently as I am on the chemotherapy tour.
long story short, was diagnosed with follicular lymphoma, last June, but was on a watch and wait regime, this turned into big lumps come October that wouldn't go down so had to have chemo then, this ended in February this year and apart from fatigue I was fine, 2 months later lumps are back again and I'm currently going through all the tests as to what happens next. I'll pop in from time to time, just to see if more loot is needed.
Also once I start again on the bike, I'll be asking questions no doubt, not beening an engineer.

Cheers

#2 Post by **mangocrazy** » Sun May 19, 2019 6:25 pm

Hello Gio, sorry to hear your news, but if you've beaten it once, hopefully you can beat it a second time. Please keep checking back - I'm sure I speak for everybody here when I wish you all the best and please keep us updated.

fatboy · #3 Post by **fatboy** » Mon May 20, 2019 7:14 pm

A salute in your direction Gio

D-Rider · #4 Post by **D-Rider** » Tue May 21, 2019 9:58 am

Hey Gio - great to hear from you again but not good to hear your medical news.
Hope they get the next course of action sorted quickly and that you tolerate the chemo well .... though never nice.
Keep us up to date with things.
Wishing you all the best
Andy

DavShill · #5 Post by **DavShill** » Tue May 21, 2019 11:26 am

Hey Gio. Great to hear from you. Bloody bad news about your health. Hope things go well for you. Keep smiling.
You know you can have a rant on here if you need to. They'll probably take the P**ss though !

Good luck. Sending positive thoughts for you and your family.

BikerGran · #6 Post by **BikerGran** » Wed May 22, 2019 7:43 pm

Sorry to hear that Peter - Hope you'll beat it and be like my Mike - after his prostate cancer he was told "people in your position have lived as long as 13 years" - lost count really but that was over 20 years ago!
Good luck!

Aladinsaneuk · #7 Post by **Aladinsaneuk** » Thu May 23, 2019 6:42 pm

Call me if needs be Peter

Gio · #8 Post by **Gio** » Mon May 27, 2019 7:26 pm

We have a plan of action, its a bit confusing when you've not had to put up with it. My first series of chemo didn't do anything to eradicate it, just controlled it, the consequence is that my lymphoma has transformed, its now based in my left groin and right armpit. Its making me feel tired a lot of the time, but having been put on various drugs to help that ie steroids to help reduce the swellings and they make you hungry as well. So the next series are spread over 3 months with each cycle lasting 1 month days 1, 8 and 15 then a 2 week break. The drugs they are using comes under the name GEM-P, made up of gemcitabine, cisplatin and methylprednisolone there I can spell long words (even say it lol).
After the end I go through the usual tests about a month after finishing.
If its worked then I have a 1 month stay in hospital where they will be taking out a decent amount of bone marrow, they will then kill off all the remaining cells in my blood and marrow, before putting back in the marrow they took out, basically its a rebirth to those of us who aren't medically minded, with luck it might kill it off, but if not, I'll be around for many years to come annoying everyone hahahaha. Its put the kybosh on our holiday plans this year, we were going to go to Dubai for Christmas as my youngest son lives there.

I know it can be frightening but I'm not, this is follicular lymphoma, lots of people live normal lives even though its not killed off. You just have to take life as it comes.
Hope I don't scare you to much, its not like having say advanced breast cancer, or lung cancer.
I go in this Wednesday and will be in overnight as they want to make sure I don't have problems, in case you wonder where I'll be its the Royal Marsden in Chelsea.
Hopefully come the weekend I'll be able to say whats changed

#9 Post by **mangocrazy** » Mon May 27, 2019 9:08 pm

Hi Gio, glad to hear that it's a known quantity and (relatively) under control. Have you read up on (or thought about) some slightly more unconventional medicine? I've read from a number of sources that plant-based remedies such as dandelions (!) and cannabis extracts (!!) have acheived some remarkable results. I never know how much credence to give these reports, but it might bear some investigation.

If your form of cancer is not as aggressive as some, then I guess it does give you the option of trying out some alternative therapies, as long as it doesn't conflict with your major treatment of course.

All the best, whatever you decide to do.

Gio · #10 Post by **Gio** » Tue May 28, 2019 7:02 pm

mangocrazy wrote:Hi Gio, glad to hear that it's a known quantity and (relatively) under control. Have you read up on (or thought about) some slightly more unconventional medicine? I've read from a number of sources that plant-based remedies such as dandelions (!) and cannabis extracts (!!) have acheived some remarkable results. I never know how much credence to give these reports, but it might bear some investigation.

If your form of cancer is not as aggressive as some, then I guess it does give you the option of trying out some alternative therapies, as long as it doesn't conflict with your major treatment of course.

All the best, whatever you decide to do.

Well Mango, I had heard about the cannabis bit, but its not recommended by any doctor I know and I've got the head of the Marsden to deal with, for all I know he might tell me to take a short walk off a cliff lol.

#11 Post by **mangocrazy** » Wed May 29, 2019 9:21 am

Yes, if you try that then you're effectively on your own. There will be no support from your GP or local hospital.

fatboy · #12 Post by **fatboy** » Wed May 29, 2019 6:46 pm

Gio, there are a few things you can try and not have to disclose....
CBD oil is cannabis oil with the "of yer face 'component removed, THC free, works really well for me with my Autism and Arthritis, also working really well for my workmate diagnosed with fatal liver cancer

BikerGran · #13 Post by **BikerGran** » Sun Jun 02, 2019 8:33 pm

I tried CBD oil to help with my arthritis but it gave me heartburn. People told me that effect would probably wear off but heartburn worries me as that's what I thought I had when I was actually having a heart attack! It can be a problem too if you're taking other meds as you have to leave a four hour gap - by then I'm desperate for the next dose of my regular stuff!

I did speak to my GP about weed, not asking for his ok as I knew that wouldn't be possible but wanted to know if there was and particular reason for NOT using it. He's a good bloke my GP - he said, carefully, "All I can say is that if I was in pain I would explore all avenues".

Which reminds me, I haven't actually explored that one because at that time I was still trying to give up smoking (cigs). I've given up now - given up trying, that is.

#14 Post by **mangocrazy** » Sun Jun 02, 2019 10:28 pm

BikerGran wrote:I did speak to my GP about weed, not asking for his ok as I knew that wouldn't be possible but wanted to know if there was and particular reason for NOT using it. He's a good bloke my GP - he said, carefully, "All I can say is that if I was in pain I would explore all avenues".

Which reminds me, I haven't actually explored that one because at that time I was still trying to give up smoking (cigs). I've given up now - given up trying, that is.

Just pop a bit of weed in with your rollies, then Bobbi

BikerGran · #15 Post by **BikerGran** » Thu Jun 06, 2019 9:16 pm

Yeah - problems are, a)I'm no good doing rollies and b) it's very difficult for a granny to find a trustworthy supplier! (or a supplier who would trust me!)