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vlagman

Please read this...

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Amazing stuff. Years ago we saw this on scifi movies and thought it was pie in the sky. 

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Update.

Saw the oncologist on Friday the 22nd. She explained to me what they will be using. 

Pembrolizumab

How pembrolizumab works

Pembrolizumab is a type of immunotherapy. It stimulates the body's immune system to fight cancer cells. 

Pembrolizumab targets and blocks a protein called PD-1 on the surface of certain immune cells called T-cells. Blocking PD-1 triggers the T-cells to find and kill cancer cells.

As a last crossing of the Ts and dotting the of the Is, as the melanoma surgeon refers to it, I was sent for blood tests, testing 21 different things. I also had another CT scan to check for possible spreading of any cancer. I had a head MRI today to check that the pituitary gland is clean as well. 

I had a pre-treatment assessment on Wednesday as well. That all went well and I learnt that, provided the blood test, CT scan and MRI come out clean, the treatment will start on Friday 20 Dec, and every third week thereafter for six months, followed by six weekly treatments for the next six months, after which they will do an assessment. I will see the oncologist again next Friday as a last session prior to the start of the immunotherapy and obviously to learn the results of the tests, scan and MRI.

There was so far just one disturbing thing. They showed me the place where they administer the stuff. They do the immunotherapy and the chemotherapy patients together. This really threw me. I'm normally very cool with medical stuff and never get thrown. I used to be a first aider after all, but this was something else. Seeing all those people connected to drips. Some of them visibly very ill. A strange odor hanging in the air as well. As I said, this kind of thing never affects me.

I have been around sick people on many occasions in my life. My mom was a nurse her entire life. She was a ward sister, scrub nurse, A&E nurse and for the last twenty years of her career she was in charge of the first aid clinic at a large steel factory. I've seen it all but this was the first time that I ever saw seriously ill cancer patients like this, getting a last life line in the form of chemotherapy. I'm honestly still battling to process it.

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On 12/6/2019 at 11:27 PM, vlagman said:

Update.

Saw the oncologist on Friday the 22nd. She explained to me what they will be using. 

Pembrolizumab

How pembrolizumab works

Pembrolizumab is a type of immunotherapy. It stimulates the body's immune system to fight cancer cells. 

Pembrolizumab targets and blocks a protein called PD-1 on the surface of certain immune cells called T-cells. Blocking PD-1 triggers the T-cells to find and kill cancer cells.

As a last crossing of the Ts and dotting the of the Is, as the melanoma surgeon refers to it, I was sent for blood tests, testing 21 different things. I also had another CT scan to check for possible spreading of any cancer. I had a head MRI today to check that the pituitary gland is clean as well. 

I had a pre-treatment assessment on Wednesday as well. That all went well and I learnt that, provided the blood test, CT scan and MRI come out clean, the treatment will start on Friday 20 Dec, and every third week thereafter for six months, followed by six weekly treatments for the next six months, after which they will do an assessment. I will see the oncologist again next Friday as a last session prior to the start of the immunotherapy and obviously to learn the results of the tests, scan and MRI.

There was so far just one disturbing thing. They showed me the place where they administer the stuff. They do the immunotherapy and the chemotherapy patients together. This really threw me. I'm normally very cool with medical stuff and never get thrown. I used to be a first aider after all, but this was something else. Seeing all those people connected to drips. Some of them visibly very ill. A strange odor hanging in the air as well. As I said, this kind of thing never affects me.

I have been around sick people on many occasions in my life. My mom was a nurse her entire life. She was a ward sister, scrub nurse, A&E nurse and for the last twenty years of her career she was in charge of the first aid clinic at a large steel factory. I've seen it all but this was the first time that I ever saw seriously ill cancer patients like this, getting a last life line in the form of chemotherapy. I'm honestly still battling to process it.

Heard the dagga oil works but never guaranteed. Hang in there, must be an emotional experience as you explained above  

:36_1_38:

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Eish, Weda. Not great, I'm afraid. I saw the oncologist again in the 13th to get the results of the CT scan, blood tests and brain MRI. The brain scan was clean but they noticed further enlarged lymph nodes. She seemed fairly convinced that that could be because of the battle that I had with the infection in the wound.

It was not the wound itself actually. The area where the drain tube went in got infected the week after the surgery and they battled for almost a month to get it to a stage where they were happy that it should now take care of itself. It took three courses of antibiotics, another two days in hospital for IV antibiotic treatment, followed by another course of antibiotics to get to that stage.

The worry, though, apart from the fact that the lymph nodes may not be due to the infection, was that the new CT scan revealed a spot on my liver that had her concerned. 

For this reason she decided to pause the immunotherapy to have a closer look to find out exactly what we are dealing with. The reason is that, should the lymph nodes and the spot on my liver be cancerous, it changes this from stage 3 Melanoma to stage 4 which would require a different approach. I was going to start immunotherapy on the 20th on only one drug called Pembrolizumab. This change of events, if proven to be the case, will mean that they will have to use a combination of two or even three different drugs, with increased risk of side-effects, obviously. In addition, it also changes the initial period of one year on immunotherapy to two years.

The reason why they had to pause the immunotherapy that was supposed to start on the 20th, is that you cannot start on one drug and then add the others as you go along. You have to identify exactly what you deal with, decide which drugs are going to be used and then continue. The drugs are also not "ready made" off the shelve, so to speak. You have to confirm that you are keeping your appointment at least 48 hours prior to your appointment. The drug is then actually made up about six hours before it is administered, whether it is only one or a combination.

For this reason I went for a PET scan yesterday. It is done similar to a CT scan but instead of Iodine, they inject you with some radioactive shit and the scan itself takes three times longer than a normal CT scan. That is to check out the lymph nodes without doing a biopsy in the same way that they did with those in my armpit. In addition I am going for a MRI of my liver on Sunday the 29th and then I will see the oncologist again on the 3rd of January. So, it is still worrying times ahead, I'm afraid.

I do my best to put up a brave face around the family to try and keep their minds of it. I leave the worrying for when I wake up at night or when I'm alone and by myself. Not the ideal Christmas and New Year period for me, this time around, but I remain positive and hope for the best. 

Edited by vlagman

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Hang in there Vlag!! You aint done with living yet - of that i'm sure!!

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Actually......if you think about it, this gives you licence to do just about anything:36_11_6:

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8 hours ago, J1M1 said:

Actually......if you think about it, this gives you licence to do just about anything:36_11_6:

True but I would rather wait for the next round with the oncologist on the 3rd before I go down that route,

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Two bits of news. 
 

Friday went down reasonably well. The results were that the MRI confirmed “something” with the liver but it did not flare up as cancer on the PET scan. Neither did the enlarged lymph nodes. So, the oncologist was probably right when she said that she was thinking that the enlarged lymph node was probably after effects of the battle with the infection in the wound. 

She has warned though that she is still playing it safe because the PET scan also did not conclusively rule out that there could still be cancer in the nodes and/or the liver. Because of that, she has decided to do the immunotherapy for two years and not twelve months as per the original plan. She also do not see the need anymore for using a combination drug. 
 

Using a single drug has a chance severe side effects of about 1%. Using a combination of two drugs increases that by 90% with a 50% chance of often being hospitalised with severe side effects. t

The other bit of news is that the treatment is starting next Wednesday. 
 

So, all in all not too bad an outcome. 

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This is very good news!

In my experience with cancer somehow i always took an extremely negative point of view.

Perhaps it's just our human nature to expect the worst, rather than the best outcome....which comes as a shock 

You're on the road to recovery Vlag and this evening i'll raise a glass to that fact!

The less time you spend in any hospital the better.......imho 

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4 hours ago, J1M1 said:

The less time you spend in any hospital the better.......imho 

You bet. I have seen enough of hospitals already in a short time and I don’t even “feel” sick or unwell. I have also not even been sick when all of this started. All in all I have been to the hospital, since August, for the following:

-To West Berkshire Community Hospital in Thatcham, a satellite of Royal Berkshire Hospital, to see the Dermatologist right at the start. I also had the second CT scan there. 

-To Royal Berkshire in Reading (RBH):

First to have the lesion on my back removed. Then to get the results of the lab tests and receive the news that there was melanoma. Then the first CT scan, then to see the skin cancer specialist. Then to have the ultrasound biopsy, then (after the operation in Oxford) to see the oncologist. Then who sent me for a second CT scan which was done at Thatcham and the brain MRI. Then for the blood tests because I couldn’t get an appointment in time at my local GP surgery. Then for the brain MRI. Then to the Berkshire Cancer Centre at RBH for the pre-treatment assessment for the immunotherapy. Then to the oncologist again to get the results of the bloods, the scan and the brain MRI. Then for the liver MRI. The PET scan was in Oxford at the Churchill Hospital. Then to oncologist again last Friday for the results. And now I will be going to the Cancer Centre every three weeks for three months and the every six weeks for 21 months if all goes well. 
 

-To John Radcliffe Hospital in Oxford. 
First for the pre-op assessment. Then for the operation and stayed in for a week. Then for the post-op checkups at the dressing clinic all in all about eight 50 mile round trips because of the infection. Then in hospital again for two days because of the infection.

-To Churchill Hospital in Oxford for the PET scan. 
 

And still I do not ( thankfully) “feel” sick. 

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A friend went into hospital before Christmas for a removal of nodules in his bladder.

He's still there, now fighting a raging infection not one doctor/specialist or anyone else knows where it is. I have a suspicion he got it in hospital................... 

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6 hours ago, J1M1 said:

A friend went into hospital before Christmas for a removal of nodules in his bladder.

He's still there, now fighting a raging infection not one doctor/specialist or anyone else knows where it is. I have a suspicion he got it in hospital................... 

While in hospital after the operation, one of the doctors told me that they want to get me out of there ASAP. I didn’t ask why. Since then I couldn’t understand why they always seem to have me there for as little as possible. I put it down to the shortage of beds.
 

Then, when I got my first referral letter for blood tests it had a huge “CHEMO” sticker on it. I was told that it was to make sure I’m moved to the front of the queue. It was then that they explained that it was because they don’t cancer patients hanging around in hospitals too much. It is to limit their exposure to all the bugs and viruses as much as possible. I was surprised. One always thinks of a hospital as a clean sterile environment and it’s not. Lots of ill people with all kinds of bugs in there. Especially at pathology where many of the people who are in the waiting room have yet to be diagnosed conditions. I was there on last Monday and there must have been around 30 people. I handed in my form when I arrived and they took me straight through. In and out in just over five minutes. 

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Somewhat better than expected news Vlag so hang in there and fight the bastards ....

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"super-bugs" are a reality & nobody knows how to deal with them......except, close the facility and build a new one?

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41 minutes ago, J1M1 said:

"super-bugs" are a reality & nobody knows how to deal with them......except, close the facility and build a new one?

Plus doctors have been over prescribing antibiotics for years and when they are really needed they have limited impact 

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1 hour ago, Docker said:

Plus doctors have been over prescribing antibiotics for years and when they are really needed they have limited impact 

True.  Over here there often cases of the Norovirus breaking out in hospitals, and schools obviously. Just last month saw an outbreak in Gloucester. 

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12 minutes ago, vlagman said:

True.  Over here there often cases of the Norovirus breaking out in hospitals, and schools obviously. Just last month saw an outbreak in Gloucester. 

The doctor reckons I had helicobacter pylori in November. Put me on a regime of three drugs for ten days including two antibiotics. All good after after 2-3 days. Went to Bali for Christmas and New Year. No Bali belly until after I got home (possibly when the alcohol intake dropped right off). No drugs this time but was hollow after a couple of days

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"is to limit their exposure to all the bugs and viruses as much as possible."

My dad went in for a "small procedure " in the beginning of 89...almost spent the whole year inside...barely made it.

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