petremac

Norske kreftstudier

Posted by

Som tidligere nevnt finnes det til enhver tid mange studier/forsøk man som pasient kan være med på. Her finner du oversikten over godkjente kliniske studier i Norge.

Om du er bekymret for kvaliteten på behandlingen da, er norsk lov veldig klar: som studiepasient skal du ha minst like god behandling som konvensjonell. Dersom du ikke responderer tilstrekkelig på forsøksregimet skal du tilbake på konvensjonell behandling. Om du på noe tidspunkt føler at du ikke har god nok behandling, kan du avslutte din rolle i studien.

Lurer du på hvordan utprøving av medisiner faktisk skjer? Det er fire hovedstadier, som beskrives enkelt og greit her. Generelle forskningsetiske retningslinjer er også ganske forståelige.

Forskrift om klinisk utprøving av legemidler til mennesker sier:

En klinisk utprøving kan bare igangsettes dersom “det kjente nytte- og risikoforholdet er veiet i forhold til den antatte gevinsten for den enkelte forsøksperson og for andre nåværende og fremtidige pasienter”

Lov om medisinsk og helsefaglig forskning (helseforskningsloven) sier:

Forskning på mennesker kan bare finne sted dersom det ikke finnes alternative metoder som er tilnærmet like effektive.

Før forskning på mennesker gjennomføres skal det gjøres en grundig vurdering av risiko og belastning for deltakerne. Disse må stå i forhold til påregnelige fordeler for forskningsdeltakeren selv eller for andre mennesker.

Forskningen skal stanses dersom det viser seg at risikoen er større enn mulige fordeler, eller dersom det foreligger tilstrekkelige holdepunkter for positive og fordelaktige resultater.

Her er en liste over brystkreftstudier som foregår for tiden og er åpne for rekruttering:

Vi har alle hørt en eller annen skrekkhistorie om pasienter som får langvarige skader og smerter etter å ha deltatt i en studie. Selv med all verdens beste etiske retningslinjer så kan man ikke sikre seg 100% mot at noe går galt. Sånn er det dessverre når man tar tradisjonell/konvensjonell medisin også. Vi som har kreft vet at uansett hvor god behandling vi får, er det en mulighet for at vi får faenskapet på nytt – enten fordi kroppen vår er genetisk feilkoda eller som bivirkning av behandlingen (fjernspredning, underlivskreft av tamoxifen eller hudkreft av stråling er velkjente bivirkninger).
Det som (for meg) er viktig å huske, er at det er kvinner som har gått foran meg og vært med på utprøving av all behandlingen jeg får. Det er kvinner som har sagt “jeg vil være med og bringe brystkreftbehandling videre for at flest mulig skal bli friske”. Kvinner som jeg har den største respekt og er evig takknemlig for.
Deltagelse i en klinisk studie er, for meg, litt som å donere blod. Vi er fryktelig mange som ikke kan donere (for egen del – fordi jeg “tilbragte mer enn 12 måneder i Storbritannia totalt mellom 1980 og 1995”) og det er mange som er livredde nåler og blod og som ikke donerer av den grunn. Det er ingen som har noe med hvorfor man ikke donerer – og om du velger å delta i en studie eller ei er også helt og holdent din avgjørelse.

The flat blog (cos flatlining would be over the top)

Posted by

I tend to blog when I have energy. But now that I’m on chemo, there are more flat days and they take more space than before – so here’s the flat blog. Just in case you think I’m happy and energetic and out doing fun stuff all the time!

Second bout of chemo and it’s developing as expected. I spent most of treatment day in bed (cos going to the hospital and spending hours there fatigues me). Thursday and Friday weren’t bad – I’m thinking that the meds don’t really hit the system until day three.

Yesterday I was flat. Not Runaway pancake flat, just flat. No energy. No strength. No inspiration. But this was as expected (after the first bout) so I’d been smart and made arrangements to go mushroom hunting with a friend. Not because I expected to be re-energized, but because I wanted to see how far I could push my body even if I was flat!

We ended up with a really nice, three hour walk. Hunting means straying from the path more often than not so we walked about 2 km and I ended up with 8 kg mushrooms, she probably got twice that. That’s not a big haul in my world. When I was at my fittest I could pick 30-50 kg per trip, but that’s a few years ago – and I am most grateful to have dear friends who will accompany me on foraging trips and pick the foods I don’t have the energy to pick & clean!

Probably one of the smartest things I’ve bought this year. Pink, fluffy, soft, gigantic socks.

Got home and collapsed – slept for five hours. Watched a silly movie and slept for ten hours. Woke up and was void of energy. I’ve noted ‘flat’ in my calendar for the first weekend after chemo. I’ve tried to clean the mushrooms but only managed ten-fifteen minutes at a time. I’ve slept – and slept – and slept – and my feet are in pain. Neuropathic pain in the feet is expected, normal, and quite debilitating – it feels as if I’ve danced for a couple of weeks in flimsy high heels.

I’ve been wearing these fluffy pink socks to try to alleviate some of the pain. At least walking is slightly less painful but I’ve tried to keep my feet off the floor most of the day. And tomorrow will be worse. I asked the oncologist about my disco ball of pain and she told me “That’s a common side effect from the Neulasta, here, have some pain killers“. Preparing myself for pain day – I might actually take a sleeping pill to get through the day.

In the mean time I’m going to dream about my new, favourite boots from Demonia – wow! I’m in luuurrrrrrve!!! Wish list, people. Wish list. You know you want to see me in those.

First round of chemo – first round of side effects

Posted by

You can read all you want about chemo, but every person’s experience is different so hope for the best, expect the worst, and you’ll find out what you end up with somewhere in the middle.

Most chemo meds require anti side effect meds as well. For my paclitaxel/taxotere I get dexamethasone, a synthetic corticosteroid (two doses before, four after) and one injection of Neulasta 24 hours after the chemo.

And although I’m still waiting for the side effects of my yew meds to set in – I have most certainly met those of my companion drugs.

Dexamethasone gives night sweats. Just as bad as the tamoxifen before I went off carbs. Swimming in sweat all night, waking up every hour or so, four nights of interrupted sleep. Now that autumn (and a chilly one at that) has set in, jumping between hot flashes and cold ones is not much fun – all through the day and night – and me being worried about getting an infection or a cold – not much fun.

But all things pass. Night sweats started on Tuesday evening and I got a good night’s sleep on Sunday. Thursday through Sunday gave me some pretty flat times – of the “I hope I make it to bed before I melt like an ice cube”.

Then comes Monday with slight rays of neuropathic pain in my lumbar region throughout the day. Not bad enough to knock me out, more of an annoyance. I much prefer constant pain – I can deal with that. These lightning bolts were completely different and they got worse as the day wore on.

I’m no stranger to pain. I can deal with constant pain (usually in bed with the duvet over my head) but this – this was really bad. It felt as if I had a disco ball in my lumbar that was sending out shards of painful lightning rather than fancy lights, and not only was the frequency increasing, the shards were getting longer and being sent down into my feet and up into my neck and shoulders and even got my tears going – and that’s a really bad sign. I took a couple of Celebra cos they’re the “nastiest” meds I have and figured that if this was how the next four months are going to be, I am staying under the duvet for the duration…

But the shards dulled slightly after a couple of hours, and although I was completely knackered at least I was able to sleep. No pain, no sweats, just blissful, dreamless sleep.

And Tuesday there was no disco ball.

I have to admit that I have been good and had naps most days – it’s not as if fatigue isn’t a natural part of my life – and I have been very happy that apart from these incidents, I’ve been pretty much side effect free. I have got chemo brain though (what’s new) so memory even worse than normal!

I probably jinxed it now – but we’ll see in a fortnight how things are developing…

Chemotherapy vs the Chemist

Posted by

2

I thought of this title a long time ago. As many of you know I almost majored in Chemistry (I just need to write a thesis) but ended up with a major in Forest Pathology. Today, I realised that it would be better off with Chemo vs the Forester, but it doesn’t sound as good!

Taxus sp. in Rogaland arboretum

For some reason I have not connected taxanes with Taxus sp, although I know that the highly poisonous yew trees have been found to be useful in medicine. I must admit that although I can easily see how Salix sp became Aspririn (in older days, chewing willow bark was found to be helpful against headaches and fevers), I have no idea how they turned yew trees into a highly potent and effective chemotherapeutic drug. Did some person with cancer chew on it?

And it is effective albeit a bad-ass drug. It’s also really difficult to synthesize because of the multitude of chiral centres (Taxol which is another taxane has 11). Enantiomers are bad enough if there are one or two in a chemical formula (see how I brought the chemistry back in?) but 11 – back when I took Organic Chemistry we were happy if we managed to get one right.

 

More Taxus! I love these trees!

Today started pretty early (up at 5:30 am) and with a few cups of coffee, I was pretty much awake by the time the taxi picked me up at 6:55. For obvious reasons one is not supposed to drive or use public transport when getting a dose of chemo! The taxi took me to the medical bus pick-up point, and the bus was awesome! I got this really nice leather recliner so I could stretch my legs properly and was at the hospital at 8:10, long before my 8:30 appointment. As always – spilled coffee on my jacket. Nothing new there.

You probably all know the drill. Sit in chair, have needles stuck in arm and retracted cos they didn’t work properly, moved to bed to take EKG, back to chair, new needle (bad needles today), cup of coffee, blood pressure measured, new needle – three’s a charm – talk with onco and two nurses. Onco clears the room (which kinda worried me) but it was only to tell me that she’s taking a sabbatical from October 1st. YIKES!!! How can she leave me like this???

Nansy of Arguably Venomous Mammals at Northern Green Gathering. Check them out before Soundcloud disappears!

 

Make jokes with support person (SP). Make bad jokes to nurse about vodka in the saline solution (got that first). Get requisition for wigs or headware (whatever that is defined by – a top hat so I can start my steampunk look?) and put on waiting list for make up class (woohoo! Maybe – just maybe – I’ll learn how to do proper make up. About time, I guess).

The meds I’m getting is actually called Docetaxel (dxl) but it’s still Taxotere. Saline was followed by dxl and I didn’t notice much of a difference. Nurse was following me closely to make sure I didn’t experience any allergic reactions, and took my BP at regular intervals. It was pretty close to normal most of the time – apart from that one time I had a new cup of coffee and had taken a large sip! They did tell me to drink plenty of fluids…

250 ccs of dxl and an extra 800 ccs of saline later, I was all done. No reactions, no problems, didn’t notice anything. Taken home by taxi. It’s been raining cats and dogs so I’m not unhappy about not having to brave cars, trains, buses and Shanks’s ponies!

OTOH SP and I had a slight disagreement regarding cats in the room (if they haven’t been spesifically forbidden, how do you know they’re not allowed?), a lot of coffee and laughs. Side effect from tamoxifen: laughing so hard you cry till your eyes turn red. Not sure I should report it.

Got home, snuggled in bed, slept for a few hours, still feel remarkably side effect free. Not sure how long it’ll last but I will enjoy it as long as possible!!!

From heaven to hell (we are now entering phase II)

Posted by

Magical purple willow lantern

In 12 hours I will be waiting for my first dose of Taxotere. Taxotere is an anti-cancer (“antineoplastic” or “cytotoxic”) chemotherapy drug and is classified as a “plant alkaloid,” a “taxane” and an “antimicrotubule agent”.

Worst case scenario: chronic neuropathy, myalgia and arthralgia; chronic hair loss and acute nail loss; nausea, diarrhoea and vomiting; fatigue, weakness and fluid retention; anemia; fever and insomnia.

Yay.

Went to the hospital for a new biopsy today. On the way home, a semi had blown a wheel (or something) so we were all stuck in a tunnel for a long time. Long enough for P6 Rock to play both Road to Hell and Highway to Hell. Not sure if it’s a sign of sorts. Happy that DAB radio worked in that tunnel.

Some have asked me why I’m getting chemo before the operation instead of after.

As you may recall, the tumour shrunk dramatically the first couple of weeks. I’ve now been on Tamoxifen/Zoladex for 6 months and it stopped shrinking a couple of months ago. Although it’s still shriveled and deflated, it’s still almost the same diameter as the first time I had an ultrasound (ca 5 cm) so instead of calling it quits with my status as guinea pig (let’s face it, not much use in checking effect of meds after the mastectomy) The Powers That Be want to see if chemo after tam/zol will reduce the tumour more or if it’s as small as it will get.

So we’re entering phase II instead of just testing tam/zol. Hooray! I get to be a guinea pig for at least 8 more weeks! And I can now blame “chemo brain” for everything I forget.

Don’t be a rat, be a guinea pig!

Posted by

Clinical trials are important. All medication undergoes rigorous testing before it can be tested on humans. And all meds have to be tested on humans before being released on the open market. Testing is used to find out the meds’ efficacy  and side effects, and to compare these with existing meds. And if you’re very lucky – you might even get paid!

As you all know, I’ve been fortunate to be eligible for the PETREMAC-trial here in Norway. For me, it’s been a win-win situation: I’m on extremely efficient meds, I’m being examined from head to toe, and I’m not suffering from the worst side effects.

There are clinical trials in most countries regarding a plethora of diagnoses, illnesses, conditions and diseases, both physical and mental. If you have some sort of diagnosis and want to know if there is a clinical trial that you might be a part of, there’s a good chance there’s a web site where you can browse and search and read more!

In the four months I’ve had this blog, I’ve had readers from the following countries. It’s alphabetical and if I can find a directory over clinical trials in your area, I’ll list it here!

Disclaimer: I haven’t checked the sites, I’m not affiliated to any of the sites, I doubt if the list is complete, and you might not find anything for your diagnosis. But it might be a good place to start if you are interested! And you should always consult your GP/doc/specialist first. There might be risks involved. Norway has very strict guidelines when it comes to human test subjects – other countries might not.

There are also international directories where you can search for trials in your country: Centerwatch

Australia Australian Clinical Trials – ANZCTR Clinical Trials

 Canada Health Canada’s Clinical Trials Database – Clinical trials – Canadian Cancer Society

Denmark Clinical Trials Office Denmark

Finland Welcome Clinical Trials Finland – Clinical research – Finland Health

France ANSM

Germany German Clinical Trials Register – German Clinical Trials Register

Greece Clinical Trials | SFEE – EUREC – Information – Greece

Iceland Clinical Trials | Licences | Icelandic Medicines Agency

Ireland Clinical Trials in Ireland

Luxembourg Clinical and Epidemiological Investigations Center (CIEC) (they even have an International Clinical Trials’ Day)

Maldives N/A (clinical trials are not allowed in Maldives)

Netherlands Trial Register

Norway Helsenorge.no

Poland Clinical Trials in Central and Eastern Europe – Clinical Trials in Poland

Saudi Arabia Saudi Clinical Trial Registry

Slovakia Clinical Trials and research in Slovakia

Slovenia Clinical Trials – Clinical Trials and research in Slovenia

South Korea South Korea: A Top Clinical Trial Destination – CRIS

Spain Agencia Española de Medicamentos y Productos Sanitarios – AEMPS – EUREC – Information – Spain

Sweden Clinical trials in Sweden – Link Medical Research

Switzerland Clinical trials – Swissmedic

Trinidad & Tobago Find Paid Clinical Trials in Trinidad and Tobago – NIHERST | Home

Ukraine GCT – Clinical trials

United Kingdom Covance – Clinical Trials Gateway

United States Clinical trials

 

 

(Not) the Final Countdown

Posted by

2

Eleven weeks today, but who’s counting? Eleven weeks until I lose control over my life, and the cancer takes over. Eleven weeks until this dratted disease will remove every feeling of control I may (or may not) have. Eleven weeks until all hell breaks loose.

But at least I now have a faint idea of what the next year will look like – assuming there are no complications. Knowing my body and my medical history, the probability of a straight run is non-existant – but onw can always hope.

My surgery is scheduled for the first week of September. At the moment no-one knows how extensive the operation(s) will be. A new MRI is scheduled for August 7th, and it will (hopefully) show whether I need a partial or full mastectomy. According to the onco, not only have the cancer cells decreased in size but it seems that they have also decreased in number.

Not that it really matters. There are a large number of lobules, lobes and ducts in the breast and as the tumour has been growing between these, the surgeons will remove as much tissue as necessary to make sure they’ve removed every single bit of cancerous cells. I would rather they remove too much than not enough. I have heard horror stories of women who have had three surgeries because the surgeons didn’t remove enough.

After the surgery, I’ll have four rounds of chemotherapy, three weeks between each round. It’s more of a precaution than anything else, and is a requisite part of the study (I won’t be needing any before surgery, since the tamoxifen/zoladex combo has been so effective). As far as I can tell it’s normal to wait 5-6 weeks after surgery before chemo starts, so I should start chemo the second week of October. Pretty much guaranteeing I will be hairless by November, I am going to freeze my tits off with no hair in December…

Radiation is next. Depending on whether they’ll send me straight from chemo (last dose just before Christmas), I should start in the beginning of January. Onco says that I should expect 4-8 weeks of radiation, depending on the success of the surgery, my response to chemo and a whole bunch of other variables. That should bring us up to February or March.

Then there’s rehab. Just as all roads supposedly lead to Rome (although I’m quite certain that more roads lead to Kroer), everyone who’s had cancer says one should go to Montebello. Now, there’s two Montebellos in Norway – one is a district in Oslo with a flimsy reputation, the other is a cancer-specific rehab centre in Lillehammer, Hedmark county, famous for the Olympics and an awesome Norwegian crime series starring Little Steven (the first season was excellent, the second fair enough; let’s just pretend that the last one was never made). That’s normally a 3-week course bringing us to May (possibly April).

In other words, in eleven weeks I will lose all control of my life until next spring. I hope that I can just hide under the covers in between battles this winter.

Oh, and in case it isn’t on your mind yet …