First of all thanks a lot for all the calls, blog comments, messages and mails after my previous blog post. I have not got around to answer to you all yet. Sorry about that!
Since summer I've had some pain in my left hip. It has been a bit on and off and I've managed fine up until a month or so ago when it started getting worse. In particular lying down has been painful and I had to start to take pain killers at night to be able to sleep. I told the doctors at the hospital and they immediately took an x-ray image of the area. There was nothing abnormal and they concluded there was no connection to the cancer. I visited the doctors at work and they suspected an infection. I got some cortisone injections, sports gel and painkillers, but nothing helped.
Two-three weeks ago the pain moved to my lower back and intensified. I brought it up with the doctor in the CT scan review. The scan did not show anything that could explain it either but the doctor set me up for a special gamma scan of the skeleton Monday this week just to double-check. I also started going to physiotherapy. The senior doctor said today the skeleton was clean. However, he suspected the pain could be a result of a tumour pressing on a nerve somewhere as there is quite a lot of cancer in the lymph nodes outside of lungs and liver and along the colon. I got a whole bunch of prescriptions for stronger pain killers.
And then about the discussion with the senior doctor today. In fact it was quite long mainly because of Marjo's many questions. Most of the discussions went over my head. Anyway, going back on the first drug (Oxaliplatin) I was on is not a good alternative. The doctor was pretty certain that it most probably would not have any impact on the cancer but only give me the side effects. We asked about the other older chemo they said could be tried but his opinion of that was the same, most probably no effect but it could be tried, actually together with gemcitabine I have been receiving this autumn. Then Marjo asked about clinical trials but there's nothing on or open I could enter.
We also discussed the Helsinki private hospital virus treatments. His opinion was that the positive news about the effect of the treatments has been exaggerated, that their scientific data is not actually bulletproof, and he does not know anyone of his patients that would have had any use of the treatment: a progressing cancer has continued to progress. He commented though that Docrates is not the only hospital in Finland giving the treatments. The hospital in Kuopio has given virus treatments successfully for patients with brain tumours using a certain virus (with virus treatments it is relevant which virus they are using).
To make sure all loose ends are tied Marjo even asked about fever/heat therapy, RFA, and radiation. He replied that the there's way too many tumours for any therapies really but if there's a tumour in a bad spot they can try to kill it with radiation of course, that's part of palliative treatment.
So to sum it up, his opinion was that whether I get some treatment or only palliative care (mainly pain management) the end result and the time I have left are going to be the same. Still, interestingly when Marjo said something about there not being any hope, he replied "There's always hope". We don't know what he meant with that as my case is clearly "hopeless" by now, but maybe it is still a good thought.
4 comments:
Hei gamle ørn!
Sitter her på nattevakt ved HRS. Om en time står solen opp i øst. Betyr tid for meg å dra hjem til familie. Tenker jeg på dem, går unektelig mine tanker til deg og dine. Synes absolutt at du bør vurdere virus behandlingen du beskriver eller annen alternativ behandling hvis du har krefter og tro på at noe kan hjelpe. Har prøvd å følge med på ulike behandlingsformer som blir tilbudt rundt om i verden. Selv her i Norge hører man stadig om nye behandlingsopplegg som prøves ut med gode resultater ved Radiumhospitalet, men som ikke tilhører standard behandlings-opplegg her i Norge. Karin fortalte meg blandt annet om en lege i Italia som har hatt gode resultater ved å sprøyte sodium carbonate/bicarbonate direkte inn i kreftsvulster. Ellers så tester to sykehus i Canada DCA i behandlingen. Her et lite utdrag fra Wikipedia:
"A study published in January 2007 by researchers at the University of Alberta,testing DCA on in vitro cancer cell lines and a rat model, found that DCA restored mitochondrial function, thus restoring apoptosis, killing cancer cells in vitro, and shrinking the tumors in the rats.
These results received extensive media attention, beginning with an article in New Scientist titled "Cheap, ‘safe’ drug kills most cancers".Subsequently, the American Cancer Society and other medical organizations have received a large volume of public interest and questions regarding DCA. Reports have since pointed out that although the study results are promising, no formal clinical trials in humans with cancer have yet been conducted in the USA and are not yet final in Canada, emphasizing the need for caution in interpreting the preliminary results.
Det jeg egentlig prøver å si Jan Arne er at det finnes mye der ute som skolemedisin har STORE vansker med å anbefale, men som ofte viser seg å fungere for enkelte (mulig dette er en kombinasjon av behandling og tro?)Skriver deg en privat mail om litt Jan Arne. Hvilken mail adresse bør jeg benytte?
Stor klem fra Johan
Hei Johan!
Du kan nå meg på aalfjord@gmail.com :)
Hei old pal!
Jeg har fulgt bloggen din gjevnlig og hatt kontakt med andre som også gjør det.
Still the best wishes for you and your family, and I also belive there is always "hope"!
A lot of thoughts to you all.
Det er så trist alt det her Jan Arne, jeg skulle så inderlig ønske det var noe jeg kunne gjøre for å hjelpe. Jeg beundrer deg og Marjos styrke gjennom hele behandlingen. Dere har aldri gitt opp, og kjemper man på, er det alltid håp. Jeg krysser fingre for at dere kommer hjem med gode nyheter fra Helsinki.
klem
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