Possible retirement at 54/ Bill's Medical Malady
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eeee-bip
Benelli TNT 125 "Bean Alley" Kymco AK550 The War to end all Wars
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Sun Jun 02, 2019 12:04 pm quote
Well the visit to Consultant No2 didn't go very well last week and the mutations in my blood were higher then he would like and this was probably a result of them changing my meds a few months back.

The highlight was meeting up with Brown Beret afterwards as he was working locally.

I'll be seeing Consultant No1 tomorrow for another catch up/blood test/beard stroking session.

Both of them have talked about bone marrow transplants but given the choice I'm much rather stay on these meds rather than have that as there's a chance that my chromosomes will stop arguing and start talking.

The only real downsides is having to think through a drug induced fog each day, feeling like you have a chilli plugged in your ass and having to keep physically fit and the drug has a long term effect on your heart.

Onwards and upwards.

Bill x
Veni, Vidi, Posti
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Sun Jun 02, 2019 12:16 pm quote
Shite, that suck Bill.

Hopefully things get under control and besides you've got things to do so letting this stupid condition get the better of you just isn't in the plans.
eeee-bip
Benelli TNT 125 "Bean Alley" Kymco AK550 The War to end all Wars
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Sun Jun 02, 2019 12:24 pm quote
Bins
Yeah, I've more important things to worry about during the next month so I'm just going to focus on that and let the drugs to their work.

I've lost a little nugget of sight in my right I when the white cells initially broke through but the left soon compensates once it's adjusted.

Bill x
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Mon Jun 03, 2019 11:00 am quote
Dang, man. Keep fighting.
eeee-bip
Benelli TNT 125 "Bean Alley" Kymco AK550 The War to end all Wars
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Mon Jun 03, 2019 11:21 am quote
Monster
It's interesting wording but the sentiment is there which I appreciate.

Last week with the London Consultant it was all bad news as my last blood test results were a bit of a concern but today with my local guy my bloods were back on track, or at least within acceptable parameters.

There's not much fighting to be done. I take a drug which reigns in the issue that's produced by my chromosomes 9 and 22 getting involved with each other and I keep as fit as I possibly can.

The fear is that it will morph from Chronic to Acute and then I'll really be in trouble.

That's it basically.

Bill x
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Mon Jun 03, 2019 11:36 am quote
Re: Monster
Bill Dog wrote:
It's interesting wording but the sentiment is there which I appreciate.

Last week with the London Consultant it was all bad news as my last blood test results were a bit of a concern but today with my local guy my bloods were back on track, or at least within acceptable parameters.

There's not much fighting to be done. I take a drug which reigns in the issue that's produced by my chromosomes 9 and 22 getting involved with each other and I keep as fit as I possibly can.

The fear is that it will morph from Chronic to Acute and then I'll really be in trouble.

That's it basically.

Bill x
Yup, screw it as what are you supposed to do? Worry all day and night? Ride and let the KM's roll by under your arse and enjoy living. I know you plan on jumping over the pond soon and I'm sure you have the healthcare figured out for it. A tricky bit of planning I would think but I'm just glad you are well enough to be doing it.

Besides we've had enough loss so you really have no choice but to stick around for a long time as we're well over our death quota.

Looking forward to your North American journey and finally meeting you in person. Lot's of us over here that will be gracious hosts I am sure.
eeee-bip
Benelli TNT 125 "Bean Alley" Kymco AK550 The War to end all Wars
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Mon Jun 03, 2019 11:52 am quote
Plus
Thank you.

The timing of losing both my parents in the same 5 weeks ( about this time last year ) has made me realise that I could wait forever to get well or just get on with it and bugger the consequences.

So for now I'll be in the US in late June and early July and again in October 2019.

July 2020 also with possibly Canada tacked on the end.

Bill x
Molto Verboso
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Mon Jun 03, 2019 12:23 pm quote
As a cancer survivor myself and my partner-in-antics (wife), I can say a heartfelt - grab life by the balls and get as much life in before you can't. We sold our house in 2017 and had done well with saving throughout our 40+years marriage, so we now enjoy several vacays per year.

We would rather continue to build new memories, rather than only reflect on the old ones. Just my 2˘
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Mon Jun 03, 2019 2:41 pm quote
Bill Dog wrote:
It's interesting wording but the sentiment is there which I appreciate.

Last week with the London Consultant it was all bad news as my last blood test results were a bit of a concern but today with my local guy my bloods were back on track, or at least within acceptable parameters.

There's not much fighting to be done. I take a drug which reigns in the issue that's produced by my chromosomes 9 and 22 getting involved with each other and I keep as fit as I possibly can.

The fear is that it will morph from Chronic to Acute and then I'll really be in trouble.

That's it basically.

Bill x
Having a dad who has AML it can go bad quick. We almost lost my dad the first time it showed up. He is now on his second round which was only stayed by a stem cell donation from myself.
I am reading all you are going through and have walked through it twice with my dad so far with all the blood checks, concerns, things changing week to week. Keep living and enjoying. My father does every day.
eeee-bip
Benelli TNT 125 "Bean Alley" Kymco AK550 The War to end all Wars
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Tue Jun 18, 2019 5:55 am quote
Crosses
So a couple of weeks ago we were all ready to go.

A scooter was going to be shipped from Denver to New Jersey and I was going ride it ( over 10 days ) to LA where it would be collected and shipped back to the middle of the country.

Got some sponsors stuff all shipped out to the start and we were counting the days until I flew.

Then I got overdosed on my tableted chemo meds and I basically got bombed out for about 2 weeks and I'm still not right.

Try to imagine a 14 day concussion and that's pretty much where I am.

So rather than run the risk of it all going wrong in Texas I've pushed it all back to September when hopefully I'll be feeling centered again.

The owner, shipper and sponsors have all been very understanding which is a blessing but yeah, I'm pretty bummed.

Arse.

Bill x
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Tue Jun 18, 2019 6:15 am quote
That sucks Bill but if it works out that you can come back in Sept. you will have much better riding weather than in the heat of summer. good luck .
eeee-bip
Benelli TNT 125 "Bean Alley" Kymco AK550 The War to end all Wars
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Tue Jun 18, 2019 6:47 am quote
) )
I don't mind the heat so much because coming from the UK hot weather is still a novelty.

I just have to get better before I attempt anything a little taxing.

Bill x
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Tue Jun 18, 2019 7:37 am quote
Sorry to hear of your troubles, hope you get better soon.
Veni, Vidi, Posti
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Tue Jun 18, 2019 7:51 am quote
Crap, sorry to hear this Bill. Rest up and try and get your strength. Fuck, cancer blows massive chunks and we've had too much of it about these parts.
eeee-bip
Benelli TNT 125 "Bean Alley" Kymco AK550 The War to end all Wars
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Tue Jun 18, 2019 8:48 am quote
Muscle
Apart from the bone marrow malady my body feels fine it's just my head feels like it has a concussion so unless the zombie apocalypse happens in the next 3 months it can wait.

I'll live

Bill X
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Tue Jun 18, 2019 12:29 pm quote
Re: Muscle
Bill Dog wrote:
Apart from the bone marrow malady my body feels fine it's just my head feels like it has a concussion so unless the zombie apocalypse happens in the next 3 months it can wait.

I'll live

Bill X
Bill there is few I can tell you to make you feel better. Just enjoy your trip and have fun.
But you’ll be back and will have to face your immediate future. After some months of new treatment my blood test seem to improve, I only say this to let you know that for everybody may be a future...
BUT my future has a bone marrow donor transplant. I fear? YES, but I hope my hematologist is not crazy and do not want to go to a dangerous treatment just for the fun of it...
I trust him, my choices were two. Transplant or CAR-T cells. He says transplant so there I go.

Should be the CAR-T cells de a choice for your case? The treatment is real hard but the danger is almost null compared to transplant. I would sure check it before thinking other options. This is my two cents for you Bill.

Take care, Jose.
eeee-bip
Benelli TNT 125 "Bean Alley" Kymco AK550 The War to end all Wars
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Tue Jun 18, 2019 12:55 pm quote
Plans
OK at the moment they are trying to find a drug that stops my bone marrow from making too many white cells.

The one I'm using is doing it's job but it's only keeping it in check, not actually stopping it from happening.

A few weeks back they tried another drug on me but I was as sick as a dog pretty quickly so they put me back on the old ones.

I'm off to see my Consultant tomorrow and I'm pretty certain they'll try another one but if that fails it looks likely that a bone marrow transplant will be in my future.

Their fear is that it changes from Chronic Myeloid Leukaemia to Acute Myeloid Leukaemia and then it all gets a bit serious.

Thank you for your supportive words people.

I'll update you all tomorrow.

Bill x
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Tue Jun 18, 2019 1:07 pm quote
Sure as hell makes my stress and petty little problems seem insignificant.My issues really just involve money and dealing with the day to day of what I do.

Clipwing and Bill I hope all the best for both of you and hope things go as well as they can. Bill we're supposed to ride the Ural to Quebec City in 2020 and you better stand up to your end of the deal! I'm also not letting you sleep in the sidecar the whole trip.
eeee-bip
Benelli TNT 125 "Bean Alley" Kymco AK550 The War to end all Wars
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Tue Jun 18, 2019 1:23 pm quote
Biffa
A promise is a promise so 2020 it is.

I have some commitments in early July but either side of that I'm good to go.

Bill x
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Tue Jun 18, 2019 9:45 pm quote
A close friend of mine, incidentally exactly your age, was diagnosed with myeloma around 15 years ago. To get the correct diagnosis took some time, he was treated for his severe back pains quite some time with a wrong diagnosis... but anyway:

He have had the bone marrow transplant done already quite many years ago and is nowadays on steady medication. Been back at work too, he likes what he does.

He's one of those "relaxed positive" types about all the treatments and medication done... when I once asked how the heck he does that, he replied that he takes all the shit needed for his cancer like he would do normal healthy stuff: he's never been too keen on exercising, but as it does good to anyone, he'll do it too. Eats his greens etc... with the same logic, if it keeps you healthy, that's what you do. The same with medicins and treatments, he takes them as a normal way of living.

Reading your comments Bill, you seem to have a bit similar attitude... and what I've seen, that's a good way to deal with it.
eeee-bip
Benelli TNT 125 "Bean Alley" Kymco AK550 The War to end all Wars
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Wed Jun 19, 2019 12:37 pm quote
Total
An interesting day at the Hospital.

I'm extending my drug free sabbatical for another couple of weeks while the old stuff goes out of my system and then I'll start on another new one in early July

This one is a bit stronger so were going to suck it and see on a low dose and see where it goes.

The bummer is the last drug made me put on weight even though I'm fitter than I've ever been - at least on the cardio front but I have two weeks to get my weight down to prevent diabetes.

On the good news front because of this gap in my meds I should have a clear head to ride, if I choose to and then we're back on the treadmill.

I'm already stroking my beard.

Each time I visit Oncology I see a whole load of people who are in a worse place than me so I don't really have the right to feel sorry for myself especially when I see what they are going through.

Mine can be contained for now but the ultimate solution would be a bone marrow transplant and if that's what it takes I'll take it on the chin.

Until then I'll live off my savings and try to enjoy every day as much as I can.

I won't return to work until I can get my memory back so until I'm off the meds it's not going to happen.

Beil x
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Wed Jun 19, 2019 8:28 pm quote
Re: Total
Bill Dog wrote:
Mine can be contained for now but the ultimate solution would be a bone marrow transplant and if that's what it takes I'll take it on the chin.

Sorry if this has already been discussed, but have you and your medical team already begun looking for a match for a BM transplant?

This can be a very long and frustrating process... particularly if one starts it only when all other options have been exhausted.

I've already submitted a sample and been registered with the international database of potential donors. But getting screened and registered is something far few people do (or are even aware of).

It is really quick, simple and painless to do. Considering how far flung this site's members are, it might be worth putting together an MV Bone Marrow registration drive.

Even if nobody here is a match for you (which, considering the odds is an extreme long-shot), somebody here might match for someone else... putting them in a position to potentially save a life.

And even if nobody here comes up as a match, raising awareness in all the MV
communities about the simplicity and importance of registering as a potential BM donor is incredibly important.
eeee-bip
Benelli TNT 125 "Bean Alley" Kymco AK550 The War to end all Wars
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Wed Jun 19, 2019 9:59 pm quote
Scope
Not yet.

The bone marrow transplant is the nuclear option so they are going down the drug route first.

It's time consuming but far less invasive than having your bone marrow bombed out with chemo and then replaced with someone else's.

That would fix it no question but both parties know that it's only going to happen when everything else fails.

Bill x
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Thu Jun 20, 2019 12:47 am quote
Re: Total
Treppenwitz wrote:
Considering how far flung this site's members are, it might be worth putting together an MV Bone Marrow registration drive.
Link for any interested UK-ers: https://www.nhsbt.nhs.uk/british-bone-marrow-registry/

(I've been on it for years and I have yet to get the call.)
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Thu Jun 20, 2019 2:22 am quote
Just catching up on this, am wishing you better health but do thInk not coming over the pond to ride across the USA until September could be a good decision as I’m sitting in the middle of this country, fields still need planting, we are still seeing a lot of flooding and more frequent rains/storms and other gifts from Mother Nature. Hopefully by September we will have better riding weather for everyone.
And for the AmeriVespa update, yes, they are getting this rain too, it’s about 270 miles north of me. And yes, it looks like rain off and on through until Monday evening.
Wishing you better health and good riding day ahead.
eeee-bip
Benelli TNT 125 "Bean Alley" Kymco AK550 The War to end all Wars
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Thu Jun 20, 2019 12:54 pm quote
Go
Bugger it.

I'm off to France next week.

It's not the USA but I need to get away.

Bill x
eeee-bip
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Mon Jun 24, 2019 12:23 pm quote
Title
So I have another 2 weeks break from the old drug until I start on the new one on July 3rd but there is a bit of an issue.

Nilotinib, which I was on makes you retain water so I'm walking around like a balloon and I'm pretty heavy.

The new drug Pazopanib can cause hypertension and diabetes so I'm on a diet to avoid the aforementioned.

The last set of blood tests were pretty good and my ECG was fine so I'm not going to die yet.

I'll have to visit my Consultant every other week in London as he wants to keep his beady eye on me but it's a small price to pay.

Peachy.

Bill x
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Mon Jun 24, 2019 12:40 pm quote
BD,
I know the “words” are well intentioned. When I was diagnosed with stage 4 cancer (prostate) in 2010 and the doc gave me the three words no one wishes to hear - “You have cancer.”, the floor and the world literally dropped out below my feet.

My dearest friends would say to me, “What can I do to help?” My immediate thought was to respond with “Get me a cure for this fucking cancer”. I knew that this was not the right response. I later learned the the best therapy was for my friends to meet up for coffee or some other distraction. “Fight the fight” is something we all do. Some are luckier than others and can vanquish, while other may not be so lucky. I was one of the lucky ones.

Having been away from MV for about a year due to some personal stuff, I was so saddened to read about Bitza.

So my “sound advice” is to burn out and burn brightly. It’s better to live without regret. Do all that you can within reason while continuing to seek medical help.

Peace out,

JP
eeee-bip
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Mon Jun 24, 2019 1:00 pm quote
Clocks
I find the well intended phrase " you can fight it" a bit odd as there really isn't any actual fighting to be done.

I take the meds as prescribed and I try to stay as active as possible and that's it basically.

This may sound odd but losing both my parents last year has enabled me to have enough behind me so I don't have to work for a bit.

That in a very bitter sweet way has been a blessing, albeit a very sad one.

Bill x
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Mon Jun 24, 2019 11:48 pm quote
So where are you planning on going in France?
eeee-bip
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Tue Jun 25, 2019 12:54 am quote
Place
Tomorrow morning.

Bill x
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Tue Jun 25, 2019 1:07 am quote
Re: Clocks
Bill Dog wrote:
I find the well intended phrase " you can fight it" a bit odd as there really isn't any actual fighting to be done.


https://www.stuff.co.nz/life-style/well-good/teach-me/111201775/the-problem-with-people-saying-theyre-fighting-cancer

** strokes beard **
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Tue Jun 25, 2019 3:58 am quote
Re: Clocks
znomit wrote:
Bill Dog wrote:
I find the well intended phrase " you can fight it" a bit odd as there really isn't any actual fighting to be done.


https://www.stuff.co.nz/life-style/well-good/teach-me/111201775/the-problem-with-people-saying-theyre-fighting-cancer

** strokes beard **
I agree with not seeing this as a “Battle” ...
I’m a cancer patient myself and what I have tried to do for the las two years of my life is readapt, change my previous life into a new one, try to change the scenario where tumorous cells have taken control.
For me the best approach is getting the best medical treatment and help it whit a change of life, all I did before took me to the cancer, so I need to do it differently now in order to “invite” the cancer cells to surrender to treatment and leave my body.
Sure anyone of us knows things that can be done better or just different, eating, loving, living in a word! Cancer is an opportunity to make that change, after all, once it has started threatening your live you have very little to lose!
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Tue Jun 25, 2019 7:36 am quote
I am just coming to grips with this thread now.

To be honest I am at a loss for words. I wish you the very best is dealing with this challenge.

Life is inherently surprising. The best any of us can do is accept the reality of the situation as it exists in the moment, and do what we can to make the best of the opportunities we face, minimizing and mitigating risks, and then being as positive and cheerful as humanly possible.

The good news is that medical science has never been more at the top of its game in the history of humanity.

Bill, if your adventures seem to be taking you to Toronto, please PM me. I know you will get a very warm welcome here.
eeee-bip
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Tue Jun 25, 2019 8:34 am quote
Rifle
Thank you. That's very kind.

Obviously everything I reserve for the future is subject to change but I have plans to visit Toronto next year to do something stupid with Harbinger so lets see if we can work something out.

I was supposed to be in the US today but my meds kind of knocked me for six a few weeks back so I've had to put it all back for a few months.

It's just part of the process I guess.

Bill x
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Tue Jun 25, 2019 8:50 am quote
Re: Rifle
Bill Dog wrote:
Thank you. That's very kind.

Obviously everything I reserve for the future is subject to change but I have plans to visit Toronto next year to do something stupid with Harbinger so lets see if we can work something out.

I was supposed to be in the US today but my meds kind of knocked me for six a few weeks back so I've had to put it all back for a few months.

It's just part of the process I guess.

Bill x
Tell you what. You can read Hemingway while in the sidecar if that helps make it less stupid. We could have an intellectual run to whatever place we head to or wind up. Right now it's looking like maybe we visit Vintage and so head out Jersey way. Maybe end up in Manhattan?
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Tue Jun 25, 2019 10:42 pm quote
Re: Place
Bill Dog wrote:
Tomorrow morning.

Bill x
Bill, remember we have a beer to have....
Just in case your route in France takes you really to the souht

Take care, have the best, Jose.
eeee-bip
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Tue Jun 25, 2019 11:24 pm quote
So
I should be somewhere near Valencia in early October if things go well.

Fingers crossed.

Bill x
eeee-bip
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Wed Jul 03, 2019 10:42 pm quote
Pieces
An fairly positive visit to the hospital yesterday.

The badness in my blood was down from .70 to .34 which is kind of weird when I've had a month without medication.

It's nice to have a clear head so I've got another 7 days to make the best of it.

I start with a new drug on the 10th of which I can only have 15mg of every other day because it's really strong and has some unpleasant side affects.

So to avoid it killing me I've had to get fitter, lose weight and address my diet which appears to have worked because my resting heart beat is now 60 bpm.

I'm trying to walk about 35 miles a week and when I can't do that I have a spin bike at home to keep it up.

Onwards and upwards.

Bill x
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Wed Jul 03, 2019 11:42 pm quote
... fight Bill, you are a strong person and your personality as well.
I am very believer and i will pray for you. Remember that we are always with you ...
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