[DaiCroParticipant]

I receive regular posts from 'Pat's Place'… Pat Killingworth (a good fighting name:-D) is an American MM veteran who attends many of the Clinical Conferences and IMHO generally has a good, clear understanding and astute eye on the rolling ball of Myeloma treatments, trials and forward medical thinking.

This is an argument he is putting forward following the latest American 3 Day Clinical Conference… and after my own experience of 'hearing' between the lines at the Nottingham INFODay I am inclined to agree.

Opinions anyone?

Dai.:-/

[b]Individual Dosing ? Could It Improve Our Survival?[/b]

[i][b]by Pat Killingsworth[/b]

While I was in Chicago for the American Society of Clinical Oncology (ASCO) meeting this past weekend, I noticed a renewed emphasis by clinicians and researchers to aggressively move forward with individual, targeted cancer therapies. Attempts to use patient-specific antibodies as a way to deliver innovative anti-cancer therapies grabbed the headlines.

But there is a far simpler way to use patient-specific information. Tailoring dosing to each individual can get the optimum results with minimal side effects, using anti-cancer drugs and therapies that are already available.

[b]This is especially true for multiple myeloma patients.[/b]

Just imagine a world where your oncologist didn?t need to guess how much Revlimid (lenalidomide), Velcade (bortezomib), or dexamethasone (Decadron) you would need to take in order to achieve maximum results.

Or better yet, that based on your body?s ability to absorb, distribute, or eliminate specific medicines, he or she would know up-front which novel therapy agent, or agents, would work best for you.
No more trial and error. No more unnecessary rashes, peripheral neuropathy, or other unwanted side effects from taking too much of a certain drug, or from using a drug that was never going to work anyway. As you may already know, clinical trials are currently designed to help determine the maximum tolerable dose for a given drug.

Patients most often are started on these maximum doses, even though the vast majority of patients don?t need to take so much in order to achieve positive results.

The current standard of care in oncology is it is better to ?err on the high side? when dosing patients.
This may minimize the risk of not hitting the cancer hard enough to be effective, but it can also lead to lots of unnecessary side effects.

This philosophy can be counter-productive in another way as well: More serious side effects often mean a physician is forced to delay or discontinue treatment. It can?t get much more counter-productive than that!

Lots of excuses are made for why individual dosing isn?t commonly used now. These include:
The doctor doesn?t have enough time to spend with each patient.

It takes too long?and is too expensive?to get a few blood samples back for each treatment agent before starting therapy.

There isn?t enough individual dosing research available to make this a reality. In the meantime, thousands of multiple myeloma patients are forced to suffer unnecessary side effects every year?including you and me!

Moving swiftly in the direction of individualized dosing may not cure multiple myeloma. But it could very well extend patient lives by helping our doctors know which novel therapy agents will work best for us, while also allowing us to stay on the appropriate medication longer.

In some cases, getting the process started could be as easy as taking periodic blood tests to measure the amount of a given drug in a patient?s blood.

Computer software is available to predict the optimum amount and times to administer a drug based on the patient?s blood tests. Then, if there isn?t enough of the drug present at the appropriate time, the dose could be increased. Too much, and the dose could be decreased.

That doesn?t sound so hard, does it?

[b]Feel good and keep smiling!

Pat,'[/b]

[DaiCroParticipant]

After re-reading Pat's argument I have something to offer.

Personally I'd love to have the option of another SCT (the benefits, not the process) but I only scraped enough SC's for the one shot and for myriad reasons I got 10 months, not the hoped for 2/3 years… but hey! It took five days on the combine harvester and two midnight visits back to the hospital for a couple of shots of Pleriaxafor (thank you Prof… an expensive try) and between it all I just about scraped 2.1 million from the whole caboodle and caboosh. The record number of bags to return SC's for the centre at City Hospital, Nottingham was 8 when I entered for my SCT… so imagine my surprise when they turned up with 14 of the blighters… each one looking sallow and shallow and swimming in preservatives that looked stronger than the SC's they were drowning. Apparently the aggressive radiotherapy I had received over the previous 12 months greatly reduced the available SC's… apparently they don't like it much.:-)

So although I had shown a remarkably good response to CDT IMHO the whole SCT was doomed, doomed I tell you, right from the start… I can't see how they could stick with so much other stuff trying to evaporate at the same time. I know I had a lot of interest from the medics who were (I found out later) amazed at the 14 bags over 3 days trick. 😀

I say this because I believe that in hindsight I should have stuck to my guns and not had my SCT (including the harvest) until my CDT remission failed (I was on 6 months and still absolutely clear when I entered for my SCT). Who knows how long that would have lasted? Perhaps another 6 months… or possibly more? I have been told that my SC count would most definitely have improved the further I got away from the radiotherapy experience… so, as I say, who knows?

I put these possibilities forward because I am getting more and more convinced that we are being 'guided' by NICE ground-rules… that has a treatment plan based on available funding for certain treatments at a certain stage, a 'one cap fits all' policy that has the implied threat that those treatments may not be available further down the road if their 'planned' maintenance is not followed… i.e. the individual, through their centre, would have to apply for the funding with no guarantees or 'gimme's' allowed.

Knowing what I know now I would ask for a personalised plan, based on responses to treatment with a pre-treatment regime of tests to gauge what might or might not work and at what dosage… which would cost consultancy time and local lab time rather than NICE funding. So, reduced and subQ Velcade, same Dex and possibly low Thalidomide just might be a package that not only suits but extends and prolongs the remission time with far less side-effects. After that another regime of CDT might well work for another good stretch (it did the first time, so why not?) And then Revlimid, Bendamustine, Palomolide and the kitchen synched etc.

Yes, I'm rambling (not ranting) but I can hear the frustration from our own UK MM specialist with regard to being, more or less, forced to put the finances before the personal plan. We are constantly told that MM is a very individual disease… and yet we get a one-stop, 1-2-3 step approach to treatments. The medics at the clinical trial hospitals do try to shape and stretch this individuality approach and I am fortunate to attend one and may yet reap those benefits… but IMHO it should be a level playing field for all, not a postcode lottery.:-|

Political will, a champion or two in Parliament and the House of Lords and, who knows, patient power may all it takes to introduce the requisite policies and sky-blue thinking needed to change the way we approach treatments.

Just saying.:-)

Dai.

[MinParticipant]

I think your absolutely right Dai, everyone starts with CDT unless there is a problem. Nice are very clear about it being 1st line treatment. Its almost been a your getting it wether you like it or not. drug until the X trials
I personally feel that whilst Peters consultant is doing his best its the best that NICE will allow him to do. Almost an ….if at first you don't succeed try something else. How many people have we heard on here saying they wanted to go back on what had been a successful drug, when they relapse only to be told its not allowed? Peter wasted a lot of time on Velcade that did more harm than good in his case, and because of the NIce rules re 6 cycles come free if it doesn't work, they kept on giving it to him long after it stopped working.
On reflection I feel angry that my husband got mm and more angry at the NIce route the clinicians are obliged to go down. They know what is needed but the suits want to save money.
I watched a bit of the BMA conference on news this morning and they said it all. Loud and clear. But is this government listening, anymore than the last lot?
Trouble is the patient has no power. Now thats where you come in and gird our loins for a fight and a protest. No breaking windows wearing a hoody needed.
MIn

[BADGERParticipant]

Dia
I agree about the dosing I have been reading a lot of stuff from America and the conclusions they come to are most people are over dosed just because it is the recommended dose. I go to UCH once every four months and they are doing a lot of work with people just giving weekly doses of Velcade and coming up with good results they also said to me if CDT worked the best first time they might revisit it if it seemed a good option so it can be done. I decided not to have STC because I didnt want to finish my kidneys off complely which due to the damage could have happened I have been in plateau now for just over two years and last test were good so fingers crossed my MM is measured by Paraprotien and bench jones I go to my local hospital monthly for the blood tests
Love Jo x

[DaiCroParticipant]

That is interesting Jo because as I have said previously, I wish I had on reflection (backed up by a pretty strong conviction at the time) held strong and postponed my SCT until after my CDT remission failed… but that's no longer an option and I didn't get enough cells for a 2nd. 🙂 >:-( 🙁

The video posted by Jet shows the concerns in America about overtreating and the time it takes to recover from such hard treatments, so, as our American friends are so fond of saying… Go figure!:-(

Are you on any maintenance drugs to keep you at your plateau? 🙂

Dai.

[mhnevillParticipant]

Hi Jo and all

I'm interested that your MM has plateaued. What numbers are your Para protein on? I haven't started treatment yet and I'm very committed to the theory of "as little as possible and as late as possible" so i found Patrick's blog encouraging.

I do worry about the different stories I hear about CDT. I'd love to know what proportion of folk go well with it and no side effects. If I hadn't stood out I would have been on it early this year. I was told there aren't many side effects, but it is not what I have gathered from all of you.

What would we have to do to get a more individual approach agreed by NICE. I was inspired by meeting Marie, one of the Velcade three. Change can happen.

Of course, I appreciate it that being an individual disease therefore putting clinicians under pressure, but surely there is a way ahead.

So appreciate all your views.

Mavis

[BADGERParticipant]

hello Dia

I am not on any drugs for mm at the moment just sodium bicarbonate and alphacalcidol plus a 4mg steriod all for my kidneys. I had 2 pulses of DEX on their own then 4 pulses of CDT which put me into plateau this was from jan 2009 to april 2009 then i took a small dose of thalidamide for a further year no problems until PN set in nothing since then except a monthly infusion of premidrinate only 30mgs not full dose of 90mgs this is to protect my kidneys.I did have a reduced doses of cyclophosphomide during CDT this also was to protect the kidneys.

Love Jo;-) x

[BADGERParticipant]

Mavis

I didnt get to much bother with CDT a bit of DEX moods (ask my husband) and a bit of constipation last months bloods were paraprotien in a band to fient to measure so I expect than means 0 at the moment lets hope fingers crossed it lasts
Love JO X

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