Dan's thread

I really hope you are in the clear @bhoyo. That’s alot of radiation therapy.

Sending you my support and much love. Keeping everything crossed for you.

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Had interim response from PALS saying they are escalating and dealing with my comments with Service Manager. At least now my concerns are recorded.

I am hoping for some improvements.

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Fingers crossed that you get both ops quickly Dan.

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I have done everything I can. Let’s see what happens. Two appointments next week. Oncologist consultant and liver surgeon with preop assessment.

Been busy boy at work. Underfloor heating, large format tiling and kitchen fitting all with same long standing customer.

Listening to system alot in the evenings, which is wonderful. Seeing kids at weekends.

Keeping everything running and enjoying every day!

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Thank you. Gee @bhoyo I wasn’t aware that you’re going through this. Hope you get positive news and thinking of you.

This fcking disease is a curse, I can’t believe how many people are suffering.

Take care.

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Fingers crossed Dan, keep us informed. :+1:

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Looking at 50% of us now developing cancer at some point in our lives!

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One thing that my councillor told me on Tuesday that I wasn’t prepared for was that I’m now at risk of a secondary cancer. That was a bit of a shock.

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Hopefully that won’t happen Pete. One thing at a time.

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Yes we’ll stay positive but I won’t be going outside without sunscreen as I’ve had a few suspicious lumps removed over my lifetime.

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Life has a 100% mortality outcome…:thinking:

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Yes unfortunately but you can’t have death without life.

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That doesn’t sound particularly helpful even if it’s correct, but it’s a hypothetical.

Apologies, I can’t remember if you underwent bone marrow ablation by radiotherapy or chemotherapy.

With radiotherapy at least, the ionising radiation while sterilising the ‘bad cells’ in the bone marrow and the bone marrow itself so to speak to allow harvested stem cells to repopulate, would have to pass through other normal tissues and we know that any ionising radiation can potentially damage other cells/tissues but the risk/benefit ratio is highly in your favour.

No different really to diagnostic chest x-rays, CT scans, nuclear medicine scans and some others (not MRI or Ultrasound) which can potentially cause cancer inducing mutations, but radiotherapy doses are generally much higher than diagnostic tests in order to produce the desired outcome.

These risks are really difficult to quantify.

A chest x-ray for example used to be considered to be worth 2-3 days of natural radiation exposure just from being on planet earth. An abdominal x-ray much more. If you lived in certain areas you’d be exposed to much more ionising radiation naturally from Radon in granite. A transatlantic flight would have been worth several years of natural radiation exposure (how many pilots know?).

image

https://www.ukradon.org/information/radonataglance

There are two types of risk - stochastic and deterministic.

Stochastic effects are random or good/bad luck if you like, they may or may not happen - this ought to be where a high but therapeutic exposure would lie, at least in terms of very serious adverse effects.

Deterministic effects are known to generally occur after specific larger doses and can range from mild to fatal (eg nuclear bomb).

Don’t know if that helps at all, but I think all medical interventions have risks, it’s a question of putting them in perspective.

If it remains a concern maybe query your haematologist/oncologist at the next visit, but as far as I know it’s a hypothetical risk.

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I didn’t understand half of that, but that doesn’t matter, what matters is that you do , I read Dan’s and Pete’s treatment and it so distant from the treatment my late father received in the 1970s .

I look at the treatment and think of all the people who helped fund the research and give thanks to them ,

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Hi Pete, again I may be barking up the wrong tree with respect to radiation risks per se being the reason for the counsellor’s comments. There may be other ones related to the whole treatment plan or simply statistical observations that the counsellor was talking about.

I guess my prime reason for the lengthy post was simply to say that if the comment of increased risk was based on radiation exposure for the procedure, then chances are it’s a random risk of harm - pretty much like smoking or sun exposure causing cancers. There may be other specific ones related to other aspects of treatment.

Are you medically qualified?

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Yes. A reasonable question.

Attempting to offer a bit of support, but I don’t know absolute specifics so can only generalise in areas I have fair knowledge of, which is why I suggest specifically asking the specialists in charge of treatment what risks are being alluded to if they remain of concern.

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I just admire the way you are dealing with your situation. Your strength can only lead to a positive result, I admire you and I send you my energy if you ever lack a little.
The mind must prevail over the physical, you have declared war on this fu… disease, your fight is admirable.

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Morning @Alley_Cat thanks for your concern but I’ve never received radiation mine has always been chemo. I have a rare blood cancer, radiation needs to target something. The procedure I’ve just completed is what they call Lace, they destroy all my white blood cells and my bone marrow, their idea is to put you in a state they call neutropenic. They do this with 5 days straight of chemo, the last 2 are high dose. At that stage I have no immune system and even now it is still compromised. I’m starting from scratch.

With all due respect my councillor is well respected and a professional. She was mainly referring to skin cancer but I’d be a fool to not listen to her.

Also there is no cure my best and only chance is remission, the stem cell transplant is my best chance to extend that period before it returns.

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Sorry Pete, didn’t intend to sound critical of your counsellor more that I was maybe surprised you became aware of the risk after the treatment rather than before, one which I suspect you’d have accepted compared to not consenting to the treatment plan.

Would you like me to delete my earlier comments?